Diabetes

Everday Carry: Type 1 Diabetes

In the first of a series, we asked four people with type 1 diabetes to open their bags and show us the gear they can't go anywhere without.

Medication is only part of the picture when it comes to dealing with chronic illnesses. In many cases, self-care involves a host of other items that you’ll need to have on you at all times.

So inspired by the Everyday Carry movement, we asked four people with type 1 diabetes what’s always in their bags—the essentials that they bring with them everywhere, no matter what, whether it has to do with diabetes or not.

Henry Jensen, student

Henry Jensen’s Everyday Carry

I decided to start close to home. My son Henry was diagnosed with type 1 diabetes at the age of five, and he’s now 11. He’s a very active kid, doing folkstyle wrestling and Tae Kwon Do after school, singing in the choir and rampaging through the woods with his friends in endless NERF wars, so he needs an everyday carry that’s durable and portable.

Henry Jensen.

Henry has two electronic devices, his Dexcom continuous glucose monitor and his Omnipod insulin pump. The Omnipod is controlled by a special-purpose device about the size of a beeper, while the Dex just talks to his iPhone 8 via Bluetooth. Both have cases on them to protect them from drops and smashes.

When Henry is low, he treats with glucose tablets, which he keeps in a plastic tube. We order them by the jar from Amazon.

He also carries a lancet, in his case the Accu-Check FastClix, to draw blood, and test strips – his Omnipod device also doubles as a blood glucose tester.

In case of emergencies, he has a Glucagon – this is a single-use shot that basically pumps a life-saving dose of sugar into his bloodstream. He’s only had to use this once, at school, and it was pretty traumatic.

Also in the bag is ten dollars of emergency cash and a lucky bullet casing he found on a hike in the woods with his cousins.

He carries everything in the Henry Hero fannypack he designed for Myabetic, a company that specializes in cases and containers for diabetes supplies. He likes it because it’s spacious but has a fairly low bulge profile.

Rob Howe, podcast host

Rob Howe’s Everyday Carry

Rob lives in Dallas, Texas and hosts the Diabetics Doing Things podcast. He was diagnosed at 16 and has been managing his Type 1 for 13 years. After graduating high school as valedictorian, he went on to the University of Colorado on a basketball scholarship and spent a season playing with the Washington Generals against the Harlem Globetrotters. He started the podcast to share inspiring stories of people with diabetes doing amazing things in the world.

Rob Howe of the Diabetics Doing Things podcast.

Most of the time, Rob keeps a pretty light bag – just a glucometer and test strips in the front pouch of his backpack. He uses the Medtronic 670g insulin pump with CGM so typically doesn’t need to pack any additional supplies.

Living in the city, it’s easy to find a 24 hour store for juice or candy to treat lows.

When he travels, though, Rob carries a more extensive loadout.

He uses a cross-body fanny pack (“2019 is a great time for people with diabetes because the fanny pack is back baby!”) – to carry extra insulin pump sites, reservoirs, CGM sensors, insulin vials, syringes, Skin-Tac adhesive wipes, and tape for CGM sites. For weekend trips, he brings one extra of each, but if he’s gone longer than a week he brings one and a half times the normal supplies he’d use at home, just in case.

2019 is a great time for people with diabetes because the fanny pack is back baby!

“Being a person with Diabetes is a lot like being in the scouts,” he tells me. “‘Be Prepared'” should always be the motto.”

Carter Clark, photographer

Carter Clark’s Everyday Carry

Rock climber and photographer Carter Clark spends a great deal of time off the beaten path. From helping grow Panama’s Kalu Yala Institute, a sustainable village being built in a river valley to shooting for firms like Hipcamp and Patagonia, she’s always on the go.

As such, her everyday carry is a bit leaner and less dependent on technology than many other diabetics. Her climbing bag typically contains a tube of glucose tablets, a bottle of insulin and a syringe for emergency injections, a blood glucose meter, test strips and a lancet.

“Thats what I’m usually carrying around and what gets thrown in my climbing bag on a normal day out.”

She doesn’t use a CGM, preferring to trust her body’s awareness of her highs and lows to cue finger testing. She also uses a Medtronic insulin pump.

Kyle Banks, actor

Kyle Banks’ Everyday Carry

While performing in Disney’s traveling musical version of The Lion King, Kyle Banks started experiencing odd vocal issues and lost his voice. After a visit to an urgent care clinic and a blood test, he was diagnosed with type 2 diabetes and prescribed prednisone.

Kyle Banks.

When he returned home to New Orleans, though, his mother felt something was wrong and urged him to see a specialist, who determined that he actually had type 1.

After learning how to manage his condition, he’s returned to the stage and started a nonprofit, Kyler Cares, to provide supplies to young T1D children in need.

“Fanny packs are all the rage these days, so I usually alternate between three of my favorites.”

In his pack, Kyle carries the Omnipod remote, as well as test strips and a lancet for manual blood sugar checks. “That reminds me that I need to change my lancet.”

He carries candy for lows, either mints or fruit snacks. He also packs a juice box for “extra stubborn hypos.”

Finally, a USB cord is vital for charging his phone, which is paired to his Dexcom CGM.

Chronic Illness Diabetes Roundups

6 Songs About Chronic Illness From Pop Stars With Health Conditions

Illness is the great leveler. Just ask Missy Elliott, Lady Gaga, Nick Jonas, Selena Gomez, Avril Lavigne, and TRACE, all of whom have written songs about the experience of being chronically ill.

When it comes to pop culture, the chronic illness experience isn’t always represented, but that might be about to change. Over the past few years, several high profile singer-songwriters and performers have revealed their own diagnoses with long-term conditions and disabilities, and they’ve begun to speak out on the topic, and even refer to it in their songs. Here, six musicians and the long-term conditions they live with.

Lyme Disease — “Head Above Water” by Avril Lavigne 

If you’ve ever wondered why Avril Lavigne took such a long break from the music industry, the answer is simple. The singer contracted Lyme disease which forced her to retreat from the spotlight, and question whether or not she’d ever sing again. Speaking to Billboard in October 2018, Lavigne explained, “I was in bed for f***ing two years. It went undiagnosed for so long that I was kind of f***ed.” She even shared that, prior to her diagnosis, multiple doctors had made her feel “crazy” by not believing her symptoms—which is something that many people, and women especially, can relate to.

2018’s comeback single—“Head Above Water”—is about the moment that Lavigne “accepted that I was dying… like I was underwater and drowning, and I was trying to come up to gasp for air” (via Billboard). Lyrics such as “My life is what I’m fighting for,” and “I’m underneath the undertow” will be instantly relatable to anyone who’s ever felt overwhelmed by a condition they didn’t ask for.

Fibromyalgia — “The Cure” by Lady Gaga

Back in September 2017, Lady Gaga was forced to cancel her European tour because of a fibromyalgia diagnosis. In a statement released at the time (via The Guardian), it was revealed that Gaga had made the difficult decision not to tour due to “severe physical pain that has impacted her ability to perform.” As anyone with fibromyalgia syndrome knows, the unpredictability of the condition means that patients can experience a variety of symptoms including extreme unexplained exhaustion, and severe muscle and body pain.

Released in April 2017, “The Cure” seemed to speak to the condition Lady Gaga had yet to reveal to her fans. Lyrics such as “If I can’t find the cure, I’ll fix you with my love,” and “If you say you’re okay, I’m gonna heal you anyway,” read like the comforting voice a chronically ill person might crave amid intense pain and discomfort out of their control. Gaga would return to the theme on the A Star Is Born soundtrack in 2018 with the track “Heal Me”.

Lupus — “Wolves” by Selena Gomez

Wild rumors suggested that Selena Gomez had absconded to rehab when, in fact, she was dealing with a lupus diagnosis she was yet to reveal to the world. Speaking to Billboard in October 2015, upon the release of her second solo album, the aptly-titled Revival, Gomez explained:” “I was diagnosed with lupus, and I’ve been through chemotherapy. That’s what my break was really about… I wanted so badly to say, ‘You guys have no idea.’”

In September 2017, Gomez revealed she’d also undergone a kidney transplant due to complications relating to the chronic illness. And she’s frank about the fact that living with a chronic illness has exacerbated her mental health. Speaking to Harper’s BAZAAR in February 2018, Gomez explained, “I’ve had a lot of issues with depression and anxiety… and it’s not something I feel I’ll ever overcome.”

Upon its release in November 2017, many fans speculated that Gomez’s collaboration with Marshmello—“Wolves”—was about lupus, and it’s easy to see why as Gomez sings, “I’ve been down the darkest alleys. Saw the dark side of the moon.”

Anxiety — “Anxiety” by TRACE

Up-and-coming singer TRACE isn’t afraid to delve into what living with anxiety is really like—conjuring it as the perpetual lurking demon it truly is. On her latest single she warns that the condition is, “Creeping through the doors, and under all my sheets. I can never sleep. It worries me.” (Which, same tbh). In the music video, the condition is literally personified, and TRACE is relentlessly stalked by two largely silent, horror movie characters.

Detailing her anxiety for L’Officiel, TRACE writes, “one minute you’re enjoying a snack in front of the TV, and the next you’re in the shower, bawling, thinking about death. Personally, Anxiety takes me away from the present and puts me in a harmful future. It makes me worry about things I cannot control or things I might not understand.”

Graves’ Disease — “I’m Better” by Missy Elliott

In 2008, Missy Elliott was diagnosed with Graves’ disease—an autoimmune disorder that affects a person’s thyroid—after exhibiting some pretty serious symptoms including a dramatic weight loss, per Billboard. The rapper explained, “It causes hair loss, your eyes bulge. My blood pressure was always up from just overworking,” having revealed her diagnosis in a statement to ABC News in 2011.

Speaking at Essence’s Black Women in Music event at the start of 2018, Elliott said of her condition, “I was sick and I couldn’t even lift a pen. My nervous system had broken all the way down.” But Elliott’s health has been improving and, as collaborator Lamb raps on 2017’s “I’m Better”, “It’s another day, another chance. I wake up, I wanna dance. So as long as I got my friends, I’m better, I’m better, I’m better.”

Diabetes — “A Little Bit Longer” by Nick Jonas

When he was 13 years old, Nick Jonas was diagnosed with type 1 diabetes, and went on to write the song “A Little Bit Longer” about finding out he had the condition. With lyrics like “Waiting on a cure, but none of them are sure,” Jonas grapples with the lifelong condition and his need to medicate and keep it under control.

In 2008, Diabetes Control explained that Jonas diagnosis followed a plethora of unexpected symptoms including “mood swings, extreme thirst, frequent bathroom breaks, and sudden weight loss.” And in 2015, Jonas told Healthline that he uses an insulin pump to monitor and control his condition, and said, “yes, it has affected me creatively in the sense of how it’s shaped who I am as a person, and given me perspective.”

If you’d like to listen to these songs on Spotify, here’s a playlist containing all of them. If you know other songs about chronic illness, feel free to add them!

Acute Illness Diabetes Q&As

The Rusty Nail That Almost Killed Me

Three years ago, Michael Porter went into a coma and almost died. Now with one less arm, he wants to educate the public about the dangers of sepsis.

After he scraped his hand against a nail while he was repairing his garden gate at his home in 2015, Michael Porter didn’t think much of it. Living just outside of Lancashire, England, the 45-year old university professor simply washed the bruise and stuck on a Band-Aid.

72 hours later, he was in a coma.

Porter had developed sepsis, an extreme illness in which the immune system ends up injuring bodily tissues in organs as it tries to fight an infection.  It affects about 30 million people a year worldwide, killing almost a quarter of them, and leaving the rest with physical and mental scars.

Three months later, Porter woke up, but didn’t make it out of his coma intact. His arm had to be amputated, and he spent the better part of the next year fighting his way back to health.

What was ironic about Porter’s battle with sepsis is as a biology and genetics professor, Porter had lectured on the dangers of sepsis.

Now, three years later, his personal struggle with sepsis has transformed his understanding of the condition and how heapproaches life itself. We spoke to Porter to learn more.

You contracted sepsis after you scraped your hand against a nail. Can you tell us more about what you were doing?

It was Christmas Eve, 2015 and I had some spare time and a chance to knock another job off my to-do list. The garden gate was not closing correctly, so I went out and spent an hour getting it fixed. It was the last DIY job I ever did with two hands.

It was the last DIY job I ever did with two hands.

I scraped my hand on a nail and got a minor cut which bled and was washed out but was really just a minor nick, that people working with their hands probably get on a daily basis.

What were you thinking as your condition worsened? Did you ever think you might have sepsis?

While I had taught people about sepsis in the past, I was cursed with the typical thought that ‘it only ever happens to other people’, but this time I was the other person.  The onset of sepsis can be very rapid, in my case about 48 hours, and by the time my condition had got serious, it was moving very fast indeed. By that point, I wasn’t thinking clearly anymore. That’s why often the people who spot sepsis are the family or friends, not the patient.  In my case, I owe my brother my life, because he spotted that it could be sepsis and the whole family rushed me to the ER.

I sometimes like to think of [sepsis] as a match being lit.  There is a tiny spark at the type of the matchhead, which then spreads out getting faster and faster until the whole match is consumed

The first sign was the muscle pain. I had a sore armpit that I put down to a new deodorant I’d used that morning.  In reality, it was necrotising myositis: my muscle was literally dying and, as the muscle was breaking down, it was poisoning my body further.

As the sepsis progressed, I started showing more of the classic signs. I had extreme shivering, and stopped passing urine. My skin only became mottled and discolored in the hospital, but by then, I was more concerned about the confusion and extreme breathlessness.  I really was dying.

It was months then before I re-emerged from my coma, at the end of March.  In the meantime, my wife and family had been told that I probably wouldn’t make it past the first night.  They had watched me be resuscitated several times because I was in multiple organ failure with artificial respiration and dialysis.

They said goodbye to my arm and gave permission for the amputation, not knowing if it would even save my life.

How did you feel when you first emerged from the coma? 

There’s an expression: “I’d give my right arm for that.” Well, I gave my right arm for life. Seems like a fair exchange.

When I first emerged from the coma, I was very confused, but became very quickly aware of my missing arm, even though I could still feel it… and can, in fact, still feel it to this day.

Having been told that the amputation was life-saving, I thought: well, I’m alive and I’ll manage. I always work on the principle that what you can’t change, just accept and look to the positives.

There’s an expression: “I’d give my right arm for that.” Well, I gave my right arm for life. Seems like a fair exchange.

 

A man with one arm and a woman wearing a white wedding dress standing outside a church door on their wedding day.

Michael Porter on his wedding day.

What was rehabilitation like? What was the hardest part?

Waking up from a 3-month long coma, I had lost 82 pounds in weight and had almost no muscle strength left.  Even pressing the nurse call button was too much for me, at that time. From there I had to begin a long process of strengthening my muscles and re-learning to walk.

Walking was particularly difficult as I only had the one arm to support myself with and peripheral neuropathy meant that the sensations coming back from my feet and hands were confused or absent.

Amazing support from a range of physiotherapists allowed me to rehabilitate and begin to move and then walk again.  Even to this day, however, peripheral neuropathy and muscle weakness continue to haunt me. Yet I still consider myself very lucky as amongst the 40% of people who have ongoing problems, as a result of sepsis, my problems are minimal in comparison.

Perhaps the hardest part of my rehabilitation was psychological, rather than physical. Losing a limb feels like a personal bereavement because, even excluding vanity, we all have an image of our self and this includes (for most people) 2 arms and 2 legs.

Being able to look at myself in a mirror, even with a shirt on, took a long time. It took even longer for me to be able to touch what was left of my arm. Thankfully the British National Health Service ensures that psychologists work hand-in-hand with physiotherapists and prosthetists to help people who have undergone amputation.  They also help me with the PTSD which is commonly seen in sepsis survivors and their family.

You’re actually an expert on sepsis, can you tell us about how and why people develop the condition?

The important thing to remember is that sepsis is not caused by any one bacteria or virus. It’s an overreaction by the body to infection, which rapidly escalates. That’s why good stewardship of antibiotics is so important, as they are the primary treatment when sepsis is diagnosed. Without them, a very large proportion of the 30 million people who get sepsis annually, across the world, would die. As it is 6 million will die, with about a 1/3 of them being children. 40% of those who survive will still have ongoing problems, as a result of the condition.

Who will get it and when is still a mystery, which is why scientists like myself continue to work on this problem.  There are suggestions that aspects such as vitamin D levels may have an impact, but this research is still at an early stage.

The important thing to remember is that sepsis is not caused by any one bacteria or virus. It’s an overreaction by the body to infection

Unfortunately, while it may be possible to treat the original infection with antibiotics, there is no specific cure for sepsis” only the symptoms can be treated. New research, however, shows that metformin, a drug used to treat type 2 diabetes, can reduce the impact of sepsis by limiting the body’s immune reaction and protecting it from damage by free radicals (oxygen-rich molecules that can damage cells).

Other promising research suggests that gene therapy may prove important in tackling sepsis, by targeting a protein produced in the body called NF-kB, which malfunctions during sepsis. If successful, these and other treatments in development have the potential to save lives and reduce the long-term impact of the disease on survivors.

The latest research seems promising, but the greatest defenses we have again sepsis are remarkably simple. These include good infection control in hospitals, good handwashing habits, clean water, and safe childbirth. But the greatest defense is awareness, which is shockingly low across the world among medical professionals and the public alike.

Surveys suggest that only 40% of people in Australia have heard of sepsis and only one-third of this group are able to identify a single symptom. Figures are even lower in Brazil where only 14% of the public know what it is. And, although campaigning in the UK and Germany has created an awareness in over 60% of people, knowledge of the warning signs is still limited.

The greatest defenses we have again sepsis are remarkably simple

As you’d expect, awareness is higher among healthcare professionals – but there is a need for greater education within this group. A definite diagnosis is often difficult, and efforts are being made to establish clear guidance for healthcare workers across the world, including the roll-out of an internationally recognized protocol for the early identification of sepsis called Sepsis 6.

With time, scientific research may provide new treatments – but in the short term, greater awareness of the condition among the public and medical professionals is likely to have the biggest effect on saving lives and minimizing harm.

Do you think your personal experience with sepsis has impacted your professional work? In what way?

As both a sepsis survivor and an academic, what was just a topic of interest has become a real passion.  Advancing sepsis research is very important to me, as well as educating the public, health professionals, medical students and the scientists of tomorrow.

I spend a considerable amount of time talking to a range of audiences, the print media, and broadcast media in various countries to tell people about sepsis research and raise awareness of the condition.

Physically, I am still able to do the work of an academic and so I am in a fortunate position, which many people don’t share. I make good use of voice recognition software, and in the lab I also rely on a prosthetic arm, which returns a lot of my previous functionality.

When you lecture on sepsis, what is the most common question?

I would love to have both arms, but being so close to death has given me a renewed zest for life and a determination not to waste any of it.

People are always very curious about sepsis, although the questions they ask are different depending on the audience.  Scientists and health professionals tend to ask more specific questions about the condition and the research, but every group asks: “how was it for your family” and “can you still feel your arm?”

The most difficult question to answer has always been: “If you could go back in time, would you rather you hadn’t lost your arm?” Obviously, I would love to have both arms, but being so close to death has given me a renewed zest for life and a determination not to waste any of it.  My story has also potentially saved others from going through the same thing or even losing their lives. So, on balance, perhaps it has been worth it.

Chronic Illness Diabetes Disability Roundups

8 Chronically Ill YouTubers To Follow For Daily Inspiration

From muscular dystrophy to seasonal affective disorder, here are nine YouTubers showing what life with a health condition is really like.

Living with a chronic health condition can be a challenge, and sometimes you just need to look to others to be inspired by other people dealing with the same issues to keep going. In fact, official studies done on the subject have shown that health vlogs can be exceptionally useful as a support system for managing chronic illnesses.

With that in mind, we’ve put together a list of 9 of our favorite YouTubers, who are documenting life with a chronic illness with humor, heart, and honesty. Although the conditions they may be dealing with vary, what unites them is the fact that they are turning their health conditions into a way to support others.

Here are some of the most inspiring users of YouTube who are living every day with chronic conditions and documenting their stories.

We’re a Cool Fam (Marfan Syndrome)

“We’re a Cool Fam” documents the story of the Huffman family (Hans, Jessica and Alyster Blaze) who all suffer from Marfan Syndrome, a genetic connective tissue disorder with symptoms that can include scoliosis, arthritis, hypermobility and heart problems.

They’ve documented everything from the parents’ initial diagnosis to efforts conceiving Alyster Blaze. There’s even a vlog about seeing a genetic counsellor regarding Marfan Syndrome before they started the process. They documented every pregnancy test, including the first successful one.

What really inspires about the Huffmans, though, is the way they don’t let their illness get in the way of living an incredible life. Just check outtheir cruises and birthday parties!

Joe Joe (Lewy Body Dementia)

Lewy Body Dementia is a condition a lot of people might know about (Robin Williams had it) but few have seen with their own eyes, which in turn, creates stigma. That’s something Joe Joe tries to change by showing what life with his mother Molly is really like.

His channel documents everything from what life with Molly was like before her condition, to what she does now that she’s been diagnosed, including painting pottery and getting pedicures. It also unflinchingly documents the hallmarks of dementia like forgetting how to perform basic tasks, his mother’s anxiety of the unknown and and the condition’s progression.

Episode #55 was posted in 2018, and marked the passing away of his beloved mother. In the video’s description, he writes: “She went to battle everyday with Dementia for 10 years. She’s my inspiration and my strength to get through tough times. I hope my Mother, Molly will continue to help thousands, maybe millions of people understand more about Dementia, and give people strength to get through whatever life challenges they might be dealing with”

Joe also started Molly’s Movement, a foundation raising awareness for the condition.

Zach Anner (Cerebral Palsy)

YouTube user Zach Anner has more than 300,000 channel subscribers and 16 million views. His channel is a window into what living with Cerebral Palsy is like, and just how much you can accomplish with a motor disorder.

Outspoken, inspiring, and entertaining at all times, Zach is an entertainer at heart, and his channel features comedy skits, workout videos, and commentary on everything from his thoughts on accessibility at airports to what life is like with Cerebral Palsy.

He’s even been featured in other YouTube channels, like the Cerebral Palsy Foundation’s “Top 10 Things I Wish People Knew About Cerebral Palsy”, Soul Pancake’s “Pimp My Wheelchair” Microsoft’s demo of the Xbox Adaptive Controller.

He’s also written a book called “If at Birth You Don’t Succeed” and recently appeared in ABC-TV’s Speechless.

The Frey Life (Cystic Fibrosis)

Cystic Fibrosis is an inherited condition that affects the lung and other organs, making it hard to breathe. On the The Frey Life, the Frey Family address common CF misconceptions and show what it’s like living with the condition first hand, such as what it’s like flying with a feeding tube, how to take care of service dogs and the best ways to teach kids about CF.

But what really inspires about The Frey Life is the way the family documents the hard times of cystic fibrosis with poise and grace. They show what it’s like to have a a painful day, or one where you struggle to breathe.

What the channel teaches, though, are that these hard days just make you appreciate the good ones all the more. And together, as a family, the Freys have more than the share of those, which they’re happy to share with a large YouTube audience.

Molly Burke (Retinitis Pigmentosa)

Molly Burke is a motivational speaker and YouTube user who was diagnosed at age 5 with Retinitis Pigmentosa, a rare group of eye disorders affecting the retina and leading to blindness. It hasn’t stopped her one bit.

With more than 1.3 million subscribers and over 56 million views, Molly’s channel documents everything from what it’s like getting a tattoo as a blind person to how to describe colours to someone who can’t see. She also covers 4 years with her guide dog and ten things you shouldn’t ask a blind person.

Molly’s even had success beyond YouTube. She was recently featured in a Dove TV ad. She can also be found at her official website.

Glitter Glucose (Type 1 Diabetes)

According to the American Diabetes Association, approximately 1.25 million Americans have Type 1diabetes, but many people outside of that club never think about day-to-day life with that condition.

YouTube user Glitter Glucose posts about everything you never would have thought to ask when it comes to diabetes, and shows the lifestyle changes necessary after diagnosis.

Videos feature her own diagnosis story, thoughts on dating with diabetes and more down-to-earth advice, like why people with diabetes type 1 or 2 should always wear a medical ID in the event of a medical emergency.

Shannon DeVido (Spinal Muscular Atrophy)

Shannon DeVido is a diverse and inspiring comedienne, actress, singer and vlogger who suffers from spinal muscular atrophy, a degenerative condition which means Shannon has to use a wheelchair to get around.

Her channel documents days in the life of her condition, her stand-up comedy appearances all over the country, and, of course, her acting reel. Just her busy schedule is enough to inspire most viewers!

She does a lot more than just vlog, too. Most recently, Shannon starred in the series Difficult People, produced by Amy Poehler and Billy Eichner, which ran until September 2017.

You can also connect with Shannon through her official website.

Sarah Hawkinson (Seasonal Affective Disorder)

Sarah Hawkinson is a YouTube and fashion blogger who lives with Seasonal Affective Disorder, a mood disorder which is estimated to affect as much as 10 million people in the US.

Sarah’s channel documents her daily life, but also speaks out openly about living with the condition, offering practical advice for fellow sufferers who need to know how best to manage their depression.

Her channel covers things like diet, the relationship about social media and mental illness, common myths about the condition, and more personal content like her dealings with self-esteem issues as a fashion vlogger with depression and therapy.

It’s vitally important for people to understand so-called “invisible” illnesses and disabilities, and through her honesty and grace, Sarah Hawkinson makes seasonal affective disorder impossible to ignore.

Chronic Illness Diabetes Instagram Roundups

8 Inspiring #ChronicallyIll Women To Follow On Instagram

By documenting their lives with a health condition, these incredible women are not only fighting stigma and raising awareness, they're helping build communities.

From moms toting perfectly (and expensively) dressed toddlers to travel influencers posting bikini selfies at 5-star tropical resorts, Instagram has no shortage of people showing off curated, unrealistically perfect lives. But there are also amazing activists on social media trying to do something radically different: show the world, in raw, vulnerable detail, what life is like with a chronic illness. These people represent a new wave of anti-ableist sentiment on the Internet, working to raise awareness and fight for other chronically ill people, while also showing that life with a health condition is like any other: a mixture of the good and bad, the beautiful and the ugly, and the painful and the pleasurable. If you want to follow Instagram influencers who help you celebrate life, with or without chronic illness, here are 8 amazing women you should follow.

Chronic Zebra

ChronicZebra

A graduate student in dance therapy, a field usually dominated by able-bodied folks. Instagram user ChronicZebra documents her journey with several chronic illnesses, including Enlers-Danlos Syndrome, Mast Cell Disease, and Dysautonomia, among others. ChronicZebra serves as an example that people with all sorts of conditions can get outside and do what they love, and that they can use resources to help them (like canes, wheelchairs, etc). Follow Mairead for a blend of health tips, real-life experiences, and a healthy dose of feminism and activism, plus some beautiful nature pics.

Just A Little Suga

Ariel Lawrence, aka JustALittle_SUga

Ariel Lawrence, who goes by JustALittle_Suga on Instagram, lives with diabetes and fights hard for representation of people of color in the chronic illness community. “I’ve lived with Type 1 Diabetes for 12 years,” she says.” I’m also a native New Yorker who is passionate about addressing educational inequality, finding a good street festival and West African dance.” Advocating for “diabetics on the margin,” like herself, Ariel’s Instagram is an empowered space which aims to live the change Ariel would like to see.

You Look Okay To Me

Jameisha Prescod, aka YouLookOkayToMe

Jameisha Prescod, or Jam, is a documentary filmmaker in London, who also lives with lupus and other conditions.  She started her account in 2014, and today, it is one of Instagram’s best spaces to connect with other people dealing with chronic illness. She says: “ Not only has the platform started to raise awareness for chronic illness, it’s become a community for chronic illness patients to uplift  and support one another which I think is equally as important as raising awareness.” Find her at YouLookOkayToMe on Instagram.

Leah Javon

Leah Javon

Taleah Javon, who goes by Leah, is a 23-year-old with the chronic illness works, including lupus, Sickle Cell, Crohn’s disease, fibromyalgia, and asthma. Although Taleah has been sick for seven years, a thread of powerful optimism and willpower extends throughout her account. She is graduating with her BS in Psychology this year and wants to be an advocate for sexual assault victims. Follow Taleah for honest posts about her struggles, and a living example of body positivity: she refreshingly embraces the beauty of herself and others, without reinforcing beauty myths or perpetuating shame. Find Leah Javon on Twitter @LeahJavon, and on Instagram.

Abby James

Abby James, founder of TheTiredGirlSociety

Abby James is a wife and mother from Perth, Australia, living with multiple chronic diseases, but she writes especially about Chronic Fatigue Syndrome (CFS), and how she balances the needs of her illness against her needs as a woman, mother, and writer. On her personal Instagram account, she posts beautiful pictures with an ethereal, vintage look, but it’s her founding of the Tired Girl Society that put her on this list. A platform for women with chronic illnesses to connect to one another, the Tired Girl Society gives spoonies a way to connect to one another, and find strength in solidarity. “I truly believe there is life to be lived and celebrated alongside the limitations that chronic illness causes,” she writes. “The Tired Girl Society society is a way to offer that as a safe, vibrant online space.

First Prioritea

Tatiana, aka First Proritea

Tatiana’s various autoimmune diseases, which include psoriasis and digestive problems, caused her to turn to a mostly fruitarian diet for relief. Under her First Prioritea Instagram account, she shares great juicing recipes, as well as tips on what fruits and vegetables to add to your diet to manage flare-ups. Her tips may not work for everyone, but if nothing else, you can see some darn beautiful fruit on her feed.

Fight2Breathe

Cayleigh Haber, aka Fight2Breath

Fight2Breathe is the Instagram account of Caleigh Haber, a two-time lung transplant survivor, who now advocates for others with breathing issues and cystic fibrosis. Through her Instagram account, she shares her recovery story, and aims to raise awareness of CF. It’s the perfect account to look at when you are feeling down about the impact chronic illness can have on your health, because Caleigh is an example of how to face those challenges with bravery and grace.

Prettiest_Unicorn

Elizabeth Kestrel, aka Prettiest_Unicorn

Elizabeth Kestrel, who has cystic fibrosis, fills her Prettiest_Unicorn Instagram account with a fun mix of cosplay and chronic illness awareness, with a few cat pics thrown in for good measure.  She talks about her disease while also discussing the other things that make her life worth enjoying. Her disease doesn’t define her, but it is an important part of who she is, and she communicates that with sincerity, vulnerability, and a wide stream of humor and fun.

 

 

There are many ways to be a chronically ill person, and no wrong way to engage with your own disease. Each of these influencers has taken different routes to share their story and connect with others; hopefully among them you’ll find an account you really enjoy. Social media can be a powerful tool for change, and each of these people has decided to use it to help them make a difference. There’s nothing more incredible than that.

Chronic Pain Diabetes Health & Fitness

The Bionic Man Of Coronado Beach

Despite his severe arthritis, extreme athlete David Nonemacher refuses to back down from a challenge.

It’s a beautiful summer day on Coronado Beach in San Diego, Calif., and a crowd has formed to watch a muscular man perform a series of extreme calisthenics. As David Nonemacher balances himself on the parallel bars, his powerful arms steady both his own 218-pound physique, and that of his 129-pound girlfriend and personal trainer, Laura Novack, who lies atop Nonemacher, her arms wrapped tightly around his torso.

While it’s an impressive display of strength for anyone, it’s even more so for Nonemacher, who is essentially a real-life bionic man. As the result of numerous injuries and osteoarthritis, the 36-year-old Southern California native has undergone a full titanium hip replacement, partial femur replacement, and reconstructive surgery on both wrists.

A former pro rollerblader, skier, and avid football and baseball player, Nonemacher’s body has taken a beating throughout the years. He’s broken his right wrist four times and undergone five surgeries to repair his injuries. His hip, initially injured while playing beach volleyball, led to arthritis pain and subsequent hip replacement surgery. And while Nonemacher says there may be a genetic component to his arthritis, he admits his intense love of athletics combined with a sense of impatience haven’t made things easier.

“I’ve cut my casts off every single time I’ve had one,” Nonemacher says. “I know that’s not being a good role model, but I’ve never had a cast actually removed by a doctor.”

In his defense, having a wrist cast can be cumbersome for someone who makes their living as a metal artist and fabricator. On any given day, Nonemacher can be found in his San Diego-studio, Nonemacher Designs, welding custom metal sculptures that have been commissioned by businesses and private clients. As a metal fabricator, he has manufactured projects ranging from a delicate artistic metal flower to calisthenics equipment such as paralletes, small gymnastics devices used to simulate parallel bars.

Despite hip dysplasia and osteoarthritis, David Nonemacher clearly has some great genes.

From Arthritis To Bionic

Although Nonemacher had experienced pain and stiffness in his joints since he was a teen, it wasn’t until 2012 that he was officially diagnosed with degenerative osteoarthritis and hip dysplasia.

“I went through many cortisone injections but they only offered limited relief,” Nonemacher says. “In 2013, my doctor told me I needed to undergo hip replacement surgery.”

Rather than choosing to give up his athletics, the diagnosis inspired Nonemacher and motivated him to lead a healthier lifestyle, and he began to take a closer look at both his diet and exercise regimen.

“Staying active is very important because it keeps my joints loose and reduces pain,” Nonemacher says. “Mornings can be tough as I wake up with my hand clasped shut, and rely on heat and flexing exercises to get moving.”

“Being sedentary is hard on my body and mind. Regular movement helps me to maintain joint function and also relieves stiffness and decreases pain.”

Yet rather than give in to the pain, Nonemacher says having arthritis motivates him to stay physically fit.

“Being sedentary is hard on my body and mind,” he says. “Regular movement helps me to maintain joint function and also relieves stiffness and decreases pain.”

In addition to regular exercise, Nonemacher maintains a healthy diet, blending smoothies in the morning made from fruit, vegetables, and protein powder, enjoying a vegan burger for lunch and then pasta for dinner.

Some bionic wall-climbing.

From Triathlons to Extreme Calisthenics

Wanting to raise awareness of arthritis and funding for research, Nonemacher joined the Arthritis National Research Foundation (ANRF) Racing for a Cure team in 2013 and raced with them for four years.

As part of the ANRF team, Nonemacher raised money for arthritis research by participating in races, and also hoped to inspire others with arthritis to stay active. He continues to support them by doing one race each year.

“I’ve read a lot of stories about people with arthritis and their stories have inspired me,” Nonemacher says. “I hope that by sharing my story, I can inspire others in the same way.”

One of Nonemacher’s greatest accomplishments with ANRF has been competing in the Escape from Alcatraz triathlon, held in San Francisco. This annual event features a 1.5-mile swim from Alcatraz Island (home of the famous prison), to the shores of San Francisco, an 18-mile bike ride, and an eight-mile run. This triathlon is considered one of the most difficult in the world. Nonemacher has also competed in triathlon and Ironman events,

Over the years, as Nonemacher’s arthritis pain has progressed, he’s changed his exercise routine to include activities that are lower impact.

I’ve read a lot of stories about people with arthritis and their stories have inspired me. I hope I can inspire others in the same way.

“I don’t run anymore except on the sand since it’s a softer surface and also acts as a shock absorbent,” he says. “Even then, I’ll run a mile at most.”

Living in San Diego, the beach is a favorite venue for Nonemacher and a place where he enjoys one of his most therapeutic pursuits: surfing.

“After my hip replacement, my doctors told me I should give up surfing,” Nonemacher says. “But being out on the ocean and catching the waves is therapy for me. I can’t give that up.”

Nonemacher has treaded in triathlons for bodybuilding, gymnastics and calisthenics, which allows him to remain active and maintain strength while putting less impact on his joints. He hopes that being candid about his arthritis will inspire others to find an exercise regimen they enjoy and can stick with—whether that’s walking, swimming or trying new challenges like he did.

“I do listen to my body and know how far I can push myself,” Nonemacher admits. “I look at my arthritis as just another obstacle in life that I need to overcome.”

Chronic Illness Diabetes Disability Features

When Diagnosis Leads To Entrepreneurship

Spina bifida, Parkinson's Disease, and Type-1 Diabetes. For these three entrepreneurs, their conditions were what launched them on the path of business success.

Some give into fear and uncertainty after a medical diagnosis. Others treat it as a call to action, reveling in the resilience, empathy, and creative problem-solving skills they’ll need to develop as they navigate life with a chronic medical condition.

It’s not too different, when you think about it, from the traits entrepreneurs need to develop to survive.

The CEO Who Wanted To Gamify Rehab

Just ask Scott Kim, who’s now CEO and cofounder of NEOFECT USA, a company that creates smart rehab products. Unlike most kids growing up in South Korea, Kim wasn’t allowed to learn Taekwondo. Kim was born with spina bifida, a condition where the spinal cord does not develop or close while in the womb. While other kids took Taekwondo, he spent countless hours in rehab from about the age of six to ten.

Scott Kim’s experience with spina bifida inspired him to create the RAPAEL Smart Glove.

“The biggest problem to me, besides the outdated facilities and tools [available to kids with spina bifida in South Korea], was I found it very boring and I wasn’t sure if I was progressing or not,” he says.

Fortunately, Kim did progress to the point where he was able to start playing sports with his friends at around 12 and 13. He even eventually started playing soccer competitively. But he never forgot the experience of having to sit on the sidelines, and when he went to the University of Virginia, where he earned an MBA, he focused on ways to improve the rehab experience for sports-loving kids like him.

What if they could gamify rehab to quantify progress and actually make it fun? He visited rehab clinics to hone his idea. “To my surprise, the rehab facilities that I saw in the United States in 2010 was not too different from the clinics I used in the early ’80s in South Korea,” Kim says. “A lot of things still look very analog. It doesn’t look very exciting. Doesn’t look like it measures the progress.”

To my surprise, the rehab facilities that I saw in the United States in 2010 was not too different from the clinics I used in the early ’80s in South Korea.

That’s why, in 2015, Kim’s company launched the RAPAEL Smart Glove for hand rehab. “Once you put it on your hand, it becomes a controller, so you can play games with the glove on at the same time you’re going through the rehab process,” Kim explains. Games include tasks like squeezing an orange, catching a baseball, throwing darts, or pouring wine.

Eighty percent of NEOFECT USA’s customers are stroke victims, according to Kim. “Others are traumatic brain injury or spinal cord injury patients,” he adds. NEOFECT sells its products to clinics including Stanford Healthcare and the Department of Veteran Affairs, as well as direct to consumer. “Our hope is that we can help people get access to the rehab tools at home so that they can get better,” Kim says.

The Woman Who Wanted To Make Type 1 More Fashionable

Carolyn Jager, founder of Sugar Medical

Carolyn Jager, founder of Sugar Medical, a line of fashionable and functional bags for diabetes supplies, also drew business inspiration from her youth. As a style-conscious teen who was diagnosed with type-1 diabetes at age 13, Jager didn’t like carrying around the ugly black medical bags that came with her glucose meter, so she’d make her own bags or have her mom make some for her.

Flash forward a few decades. After leaving a job as a buyer for Macy’s, Jager was looking for a new project. A family friend needed a pancreas transplant due to complications related to diabetes, an incident that served as a wake-up call for Jager. “It scared me quite a bit,” she says.

Jager launched her business in 2009. “I’m not a scientist or anybody who can cure diabetes,” Jager says. “But I could make improvements in how [people with diabetes] carry their glucose supplies and avoid complications that arise from poor glucose control.”

We’re offering the public a better way to carry supplies without people asking ‘what is that?’ This is a line of bags that no one would think are a medical bag.

Sugar Medical bags aren’t just pretty; they’re also practical. Jager points out that a bag with a bright teal stripe or a big purple butterfly is easier to spot in the bottom of your gym bag or across the room.

Plus, the bags include a built-in receptacle for glucose test strips that otherwise wind up everywhere. “There’s a vinyl-lined compartment which you can wipe out and clean,” Jager says. “It can hold up to 200 test strips. It’s not necessarily the diabetic who finds in the best feature; it’s the family members who don’t have to pick up strips all over the house.”

A look at Sugar Medical’s line of fashionable diabetes kits.

In addition to selling to consumers online, the 5-person company now has a licensing agreement with an insulin pump manufacturer, and the bags are included in a care kit provided to people who are recently diagnosed with type-1 diabetes. “We’re offering the public a better way to carry supplies without people asking ‘what is that?’” Jager says. “In the Type 1 and Type 2 diabetes community, there are a lot of individuals who are sensitive to being labeled as “diabetic” and are embarrassed to carry their supplies. This is a line of bags that no one would think are a medical bag.”

The Shoe Maven Facing Parkinson’s In Heels

Meanwhile, Tonya Walker received her diagnosis in adulthood, but like Jager and Kim, she used the experience as an impetus to make an impact on other patients and their families.

Starting around 2006, Tonya Walker noticed that her left arm didn’t swing when she walked, and had also lost dexterity. Two years later, the Florida mother, then 34, was diagnosed with Parkinson’s disease. “My husband and I went to the doctor together, and we didn’t talk about it the whole way home,” she recalls. “Really, we didn’t talk about it for five years. We basically chose to ignore it. I think I was living in denial. I didn’t tell anybody except for my immediate family.”

Walker loved high heels but Parkinson’s messed up her balance, so she could no longer wear them. Then in August 2013, Walker had her first brain surgery and her balance improved to the point that she could dust off her high heels. “We decided to start a fashion and shoe blog and use it as a platform to raise Parkinson’s awareness,” Walker says. “When society thinks of a person living with Parkinson’s, they don’t envision someone in their thirties.”

Tonya Walker, who has Parkinson’s, started the Show Maven to prove that fashion transcends illness.

The Shoe Maven launched in 2014, and has two main audiences, according to Walker. For people who don’t have first-hand experience with Parkinson’s, she says “they see fashion and may not even realize I have Parkinson’s.” Then as they read her bio or dig deeper in the archives, they might learn about her diagnosis and about the disease.

The other audience is people with Parkinson’s, especially with young onset Parkinson’s like Walker. “They can go to my blog see that I’m living a joyful, happy life with the disease,” Walker says.

The blog is mostly a passion project, but it has helped Walker raise money and open doors to other opportunities. For instance, she sold T-shirts called TSM Originals and donated $5 from the sale of each shirt to the Michael J. Fox Foundation for Parkinson’s Research. She also organizes an annual fundraising event called Art of Fashion in collaboration with local fashion boutiques, museums and galleries.

Walker’s online presence as a blogger has led to speaking engagements with pharmaceutical companies and community organizations. She also shared her story during the World Parkinson Congress in 2016 in Portland, Oregon. As Walker works towards higher-profile gigs as a motivational speaker, she says, “I don’t want other people to feel like they have to live in denial or secrecy.”

Diabetes Q&As

The Diabetes Cyborg Hacking Her Own Pancreas

Dana Lewis invented the Open Artificial Pancreas System to make things easier for herself, and millions of others type 1 diabetics around the world.

In one specific way, Dana Lewis is a cyborg. To cope with her Type 1 diabetes, the health researcher wears what she calls an Artificial Pancreas System, or APS, a sort of DIY external organ. Clipped to her hip, it consists of an insulin pump reverse-engineered so as to be able to communicate wirelessly with a small computer and radio stick. Every five minutes, the computer monitors her glucose levels then adjusts the pump accordingly, automating what has always been a human labor. Blood sugar levels can be affected by everything from stress to diet to jet-lag but the APS takes all of this into account with the sober calculating of, well, a computer. For diabetes sufferers, the device is a godsend. Lewis is its inventor.

Today, Lewis is the leader of what she calls the open source APS movement. Hundreds of people, she says, build and use an APS across the globe. Every year she counts more and much of the growth can be attributed to her evangelizing. Extremely active on social media–“a prolific Tweeter”–Lewis is constantly singing the praises of her APS experience. Her Twitter account is chock full of pictures and anecdotes; Lewis meeting up with other APS users; Lewis getting through airport security scot-free with her APS attached (“#havepancreaswilltravel”).

Lewis is, undoubtedly, totally committed to the DIY cause. With a grant from the Robert Wood Johnson Foundation, she works from her home in Seattle communicating with other APS users, all of them trying to figure out how to perfect and proliferate the device. There are around 1.25 million Americans affected by Type 1 diabetes but Lewis has nothing less than the world’s whole population of sufferers in her sights. With such a bold vision, we reached out to hear more about her plans.

Dana Lewis standing in a field of tulips.

First off, why is the APS such a game changer?

In type 1 diabetes, what a person has to do is constantly be aware of not only their blood sugar but a lot of other factors about what they’re eating and the timing of their insulin [intake]. It’s a lot to keep track of. You have to do it 24/7, 365 days a year for the rest of your life after you’re diagnosed. What’s great about the artificial pancreas system is instead of having a human be burdened with staying on top of every single number and projection–that’s what a computer is perfect for. It can do the math every five minutes. It doesn’t get tired or emotional or worn out. It’s able to crunch the numbers and do the decision making automatically, no matter what the human is doing. It removes a lot of the cognitive burden and often achieves better outcomes than what people can do by themselves.

What is looping?

Looping is what we use to describe the act of using the system. It’s technically known as a hybrid closed loop but we call it an artificial pancreas. Looping is the act of closing the loop between the pump and the CGM.

How did your own experience with diabetes lead to this innovation?

I’ve had type 1 diabetes since my freshman year of high school, almost 15 years now. The APS actually started with one particular problem that I wanted to solve around making my continuous glucose monitor (CGM) louder. That’s the device that measures your blood sugar every five minutes. It’s supposed to alarm you when your blood sugar is too high or too low. But I would sleep through the alarm. It’s actually very dangerous. My frustration was around wanting to get the data off of that particular alarm in order to make a louder alarm using my phone. Once we were able to achieve that, we were able to build algorithms that led us into building the artificial pancreas. It’s funny because that wasn’t the original goal of the project. The goal was to wake me up. But now I have a device that lets me sleep and automatically takes care of everything for me.

A look at an artificial pancreas system.

Who is ‘we’?

This is an open source community project with a lot of people. Primarily it was myself and my now husband, Scott, who was my co-design and development partner throughout this entire project. When we first met in 2013 his first question about my insulin pump was, ‘Why doesn’t it talk to your CGM?’ I said, ‘They’re different manufacturers–of course they won’t talk to each other.’ But it wasn’t until six months later that we found somebody through Twitter who had solved the problem of getting data off of CGM that then allowed Scott and I to build all of these subsequent systems. Social media really brings people with ideas together to be able to collaborate on tools like this. This might not have happened had we not had social media to connect people. We did our first louder alarm system in 2013. A year later, December 2014, we had closed the loop and built the artificial pancreas. Today, over 500 people worldwide use an APS.

Why do you consider this a movement?

It’s definitely a movement. We use the hashtag #WeAreNotWaiting. People say, ‘Why do you do this?’ It’s the fact that we are going to wait years for a commercial solution that may or may not fit our needs. Why wait when we have off the shelf consumer grade hardware that actually allows us to do this?

Are there commercials products available now?

I’m not satisfied with stopping just because there’s one thing available for a few people in one country. That’s not good enough.

There is one commercial solution that’s now available in the US. It’s very very expensive. But it’s important to realize that this is a global issue. So I’m not satisfied with stopping just because there’s one thing available for a few people in one country. That’s not good enough. We really need technology that’s available in every country. There’s a big role for the diabetes community to play in terms of educating people. If you can’t afford or access a commercial option because you can’t get insurance approval or it’s not available in your country that doesn’t mean that you have to suffer in the meantime. You do have a choice to go and try something DIY.

How are you spreading the word about this?

We have a website that links to the open source codenames and documentation. People also share frequently across social media. They blog, tweet, give talks, post videos, talk about it on Facebook. It’s really word of mouth that connects the community with one another. That’s important because it’s DIY. People have to build it themselves. There’s nobody to give them the thing because we’re not a company. We can’t do that legally. People often run into questions when they’re building it. But that’s the great thing of having a whole community because you have dozens if not hundreds of people who can help answer questions about what’s happened–if this happens on this type of computer or I have a question on how the algorithm works. So it’s a really 100% open-source effort in terms of not just the code but also the kind of help people give.

Just because an artificial pancreas is homemade doesn’t mean it can’t come with cute accessories.

Is an APS difficult to make?

There’s a perception that it is. But we actually have dozens of people who come in with no technical experience and they’re able to get it up and running in about an hour. It’s not impossible but the big barrier is people being willing to try. What’s surprisingly funny is there’s some people who come in with a lot of technical expertise and they start getting bogged down in the weeds and try to fine tune it after building it, without building it successfully first. So they’re slower to build the system than people with no technical background.

The big barrier is people being willing to try.

Once people get them going, how does the APS impact people’s lives?

For me it’s peace of mind. Others, like parents, who have a constant worry about their children and wake up several times a night to take care of their children talk about how great it is being able to sleep again. For other people it’s about having to do less work for diabetes. The amount of work it takes is so much less with this technology. Also the blood sugar itself. It’s easier to reach your goal of blood sugar and stay there with an APS.

What are you working on right now?

We are continuing to evolve both the algorithm and the hardware that we’re using. I’ve been looping now for over three years. The hardware has changed. Our biggest challenge is time. It’s a 100% volunteer project. When something comes up it’s based on us carving out the time to do it and being self-motivated. No one’s paying us. We do get a surprising amount done but more hands makes for lighter work. It’s always nice to have more volunteers join the community.

What are the demographics of the community?

We have people all over the world. Brazil, UK, Spain, Russia, Bulgaria, China, Australia. People on five continents looping. The language barrier might be bigger than the technical barrier. But Google Translate has made a big difference.

What are your long term goals?

One of the challenges right now in the US is there’s only one kind of pump which is loopable. These are old pumps which have technically been recalled because of a quote unquote security flaw. Somebody found the ability to remote-control it. The FDA told the company to recall it. But that same kind of flaw is what actually allowed them to remotely communicate with our computers, which is actually ideal. So those of us who are looping have decided that the benefits of looping outweigh the minimal risks of somebody trying to do something malicious.

These pumps are not brand new. You can’t buy them in warranty. You run the risk of your pump breaking and having to buy another one on a secondhand market. There are other pumps available from manufacturers elsewhere around the world that have bluetooth built in, modern pumps without security flaws. We’re working with pump manufacturers to have them bring a modern pump to market in the US and elsewhere around the world where we don’t have to rely on the security flaw and can actually use an in-warranty modern pump. We’re trying to facilitate the use of open protocols, so instead of having to hack the communication and do a lot of reverse engineering work we’d much rather have a clearly documented communication protocol that the user can safely and securely use. A big push of our community’s work is pushing those companies to bring these to market.  We shouldn’t have to reverse engineer medical devices.

Diabetes Essays

The Weight: Caregiver Fatigue And Diabetes

When your kid's life is on the line, caregiving is a 24 hour job. What do you do when that job wears you down?

Happy Holidays! Folks is taking a break until January 2nd. In the meantime, enjoy this story from our archives. Originally published on November 16, it is one of our favorite pieces from 2017.


It’s 2:14 in the morning and a high-pitched beeping is coming out of an iPhone next to my bed. I groggily stand up, trudge upstairs, and save my son’s life again.

My son Henry has type 1 diabetes. It’s an incurable autoimmune condition that, if managed well, won’t have a significant impact on his quality of life. But managing it well presents its own challenges for my wife and I.

Henry Jensen.

The thing with diabetes is that there are two dangers. If his blood sugar goes high, it’s not an immediate threat. Too much of that will cause his eyes to fail and his organs to shut down, but we catch that kind of thing pretty quickly and he’s very responsive to insulin. But if it goes low– and keeps falling–it can result in him falling into a coma and dying. When he goes low, he typically loses 50% of his brain functionality, meaning that he’s not always capable of treating it himself.

It happens all the time. And his sugar can drop really fast. We’ve been out swimming or hiking and he’s plummeted from the mid-80s to the mid-40s in ten minutes. Once he was at school and he dropped so precipitously that he wasn’t coherent enough to take sugar by mouth. The staff had to give him the Glucagon, an injection of sugar that will rapidly spike his blood glucose back up to safe levels. That’s a big needle, a scary needle, and it goes right into the muscle.

So we have a device called a continuous glucose monitor, a little needle implanted in his arm, attached to a Bluetooth transmitter that broadcasts his blood sugar level to his iPhone, and then into the cloud to our iPhones. It’s a wonder of technology, something that would have been unthinkable a generation ago.

Instead of having to take a needle, prick his finger, and siphon blood into a glucose meter every time we need to look inside his body and find out his sugar, we can now see it whenever we want. He’s also wired up with an insulin pump, a small device in his stomach or back that we replace and move every three days, so when we need to bring his sugar down it’s simply a matter of conveniently pressing a few buttons as opposed to prepping a syringe, measuring a pull of insulin, finding a site and giving him an injection.

Things are tremendously better for him than they were for diabetics 20 years ago. But that doesn’t make them necessarily better for me. The downside of having all this information at my fingertips is that I’m constantly on edge, an information junkie for my son’s survival.

The downside of having all this information at my fingertips is that I’m constantly on edge, an information junkie for my son’s survival.

Some nights his alarm goes off every two hours, each time asking for more insulin or more glucose to stabilize his sugar one way or another. Some nights his alarm never goes off at all. Even then, I find myself waking up anyways, usually at 2:30 in the morning, and reaching over for his phone in a panic. Did the battery die? Is he OK? He is. He always is. But I still check.

And then there are the nights his alarm goes off, and goes off again, and again, and again. On a particularly bad night I can be up every hour or two to give him a sip from a juice box to raise his sugar, or a unit of insulin to bring it back down. And then I have to get back in bed and try to get back to sleep with the lingering adrenaline from being woken by the alarm still coursing through my system.

It’s exhausting to have Type 1 Diabetes, but it can sometimes be even worse for the parents.

Let’s be clear: it’s not just me doing this. My wife handles an equal share of the responsibilities for his care. Even with two of us, though, it’s a lot. And it’s wearing us down.

Doctors call it “caregiver fatigue.” It’s when you push yourself to the limit every day contending with the needs of your loved one with an illness and it results in problems for your own health.

Common symptoms of caregiver fatigue include irritability, inability to concentrate, appetite issues and vulnerability to sickness. I can only speak for myself, but after a string of rough diabetes days, I can be a miserable person to be around.

After a string of rough diabetes days, I can be a miserable person to be around.

For me, the biggest issue is sleep. There’s plenty of science that shows that cognitive abilities start to decline when you get less than 7 hours of uninterrupted sleep a night. I can only think of a handful of nights I’ve done that in the last four years. I am fully aware that I’m not operating at 100% capacity, and it affects every other part of my life, from my relationship with my wife to my exercise and diet. I don’t have energy to play with my kids, and I start feeling resentful of their very existence. It’s no good for anyone.

Caregiving is a 24 hour job. And I already have a job. You can’t take a smoke break or slack off at your desk playing Minesweeper when your kid’s life is on the line.

It all came to a head earlier this summer, when my wife left for a week on a business trip. Everything fell apart – Henry got hand foot & mouth disease at a party (please don’t bring your kids to parties when they’re sick) and it made his blood sugar extra volatile as it covered his extremities with blisters. I should have dropped his carb intake, but I didn’t have the time or energy to cook so we did one pizza night too many. Every night was awful, and every day was full of too many things to do. I took great care of my kids, but at the same time I was stretched to my limit. And then I broke.

I wound up spending a week in a mental hospital, dealing with issues that went beyond caregiver fatigue but my exhaustion definitely exacerbated. I was put on an antidepressant and met with some doctors to learn new coping mechanisms. And most importantly, I was forced to admit that I can’t keep doing this without help.

And then I came back to my family.

You can’t take a smoke break or slack off at your desk playing Minesweeper when your kid’s life is on the line.

The biggest issue with type 1 diabetes – and really most chronic illnesses – is that you can’t control them. You can only manage them, and that takes constant effort. And my only real job on this planet is making sure that my children grow up as happy and healthy as humanly possible.

The Jensen family.

Every day is a new challenge to navigate, to learn how to take care of myself as well as I take care of my children. But it’s the same challenge that every parent out there is dealing with. I just have a few additional layers of stress on top of it.

There’s no magic bullet for caregiver fatigue, no medication that will make you care just enough and no more. Just like my son has to learn to listen to his blood sugar and feel if he’s low or high, I need to listen to my joints ache and my head buzz and know that I need to rest. And just like I help my son, my family can help me. One of the best ways for me to manage that stress is to put my work down and sit and play LEGOs with him, or read comics. To let myself experience his childhood unencumbered with him.

I’m going to be caring for Henry until he’s 18, and probably longer. What makes it worth it is knowing that he’s also caring for me. Thinking of him, and my wife, and my daughter while I was in the hospital made me realize that I need their strength as much as they need mine, and together we can do things for each other – and the world – that we could never do alone.

Diabetes Profiles

Full-Time Mom, Part-Time Pancreas

Being a caregiver to two kids with Type 1 Diabetes requires a lot of love, math, and sleepless nights. But Julie Seabury says it's all worth it.

It’s Caregiver Week on Folks! This week, we’ll be telling stories about the people who provide physical and emotional care for the people they love most. Learn what PillPack can do to help caregivers here.


“Learning how to care for a diabetic is like a part time job,” says Julie Seabury. Except it’s one that starts at dawn.

Everyday, Julie starts the day on alert. As soon as they wake up, her daughter Maddy, 10, and son Jake, 14, check their blood levels and tell her the results. “I want to know what we’re starting at,” Julie explains, equating it with a quick glance at the fuel gauge before you rev up the car.

Julie Seabury

Then comes the math. The kids make their own lunches, writing the estimated carb count for every item they pack. Their breakfast depends on their blood count, but never includes carbohydrates, which might cause their levels to spike. But eggs and bacon are usually on the menu, as well as carefully measured glasses of juice, if their morning blood sugar levels are low.

Next, the drive to school. Maddy and Jake’s teachers are prepped on what to do ‘in case of an emergency’, but Julie still needs to double check that the administration knows the signs of high and low blood sugar, and that the nurses have backup meds on hand in case of emergency. Once she’s confident the kids can get through the day, she drives off to her full-time job, also as a teacher at a nearby school, but even then, she’s always got one eye on an app that connects to Maddy and Jake’s blood monitoring systems so she can check on them throughout the day.

Night is the scariest time.

When you have type 1 diabetes, there’s a phenomenon called “Dead in Bed” syndrome, in which low-blood sugar can result in a person with diabetes slipping into a coma and dying. Julie’s nights are filled with surges of fear that, if she doesn’t check on them regularly, either Maddy or Jake will succumb to the syndrome.

So every night, Julie sets two alarms: one at 1am, then another at 4am. When they go off, she slips into her children’s rooms as quietly as she can, to check their blood levels. Sometimes, when she checks, her kids’ glucose levels will be off the charts, seemingly for no reason. Then, she and her husband are up six or more times per night, bringing her children juice and making sure they’re okay.

The Seabury Kids. Maddy, front, and Jake, right, both have Type 1 Diabetes.

Before June 2014, Julie couldn’t even imagine having to worry about such things. That was the month that Julie’s youngest daughter was diagnosed with Type 1 Diabetes.

“There really is a learning curve [to managing Type 1]…      It’s not a simple math.”

Maddy, then 7 years old, had recently begun losing weight. Normally bright and energetic, she became lethargic and sickly. Already managing celiac, Maddy was more susceptible to other autoimmune diseases, so Julie and her husband took their youngest daughter to the hospital. What followed was a whirlwind 24 hours in intensive care, followed by a three-day crash course in which Julie–a total stranger to the world of diabetes–had to learn all of the (seeming) calculus needed to keep her T1D daughter healthy.

“There really is a learning curve,” Julie remembers. “It’s not a simple math.” Luckily, Maddy was diagnosed in summer, months Julie has off from work. During this time, she perfected her technique: checking blood glucose levels with a finger prick, injecting insulin, and counting carbs to keep Maddy stable.

It was good she had the practice. Six months later, her oldest child, Jake, was also diagnosed. This time, she knew just what to do, but while it was easier in some ways, “it was also harder, because I knew what [type 1] meant,” says Julie. “I knew what it meant for our family.”

A glimpse inside Maddy’s bag reveals lots of diabetes supplies.

Three years later, Julie and her family have adjusted to the drastic lifestyle change that comes with having two of their three children diagnosed with T1D. Now, Maddy and Jake are “pretty darn independent. “ They test their own blood, count their own carbs, change their infusion sets for their insulin pumps and know their bodies well enough to be aware of their needs when they are exercising, eating lunch, or having highs and lows in their blood glucose levels.

With all these struggles, parents that have children with T1D need support. That’s why a significant portion of Julie’s spare time is devoted to reading messages from other Type 1 parents online, through blogs or Facebook groups. Julie doesn’t often post herself, but “just seeing other people putting themselves out there” helps her, she says. “I can read that and know that I’m not alone – other people are out there crying their eyes out too.”

One day, Julie posted on her own Facebook page: “Today, being a pancreas is kicking my butt.” Both Maddy and Jake’s CGM devices broke, expensive pieces of equipment which provide Julie with important mobile alerts about their blood sugar levels. The bad luck highlighted another underemphasized fact about being a caregiver for someone with Type 1 Diabetes: the constant expense. All of this equipment costs money, and even with insurance, it puts sizable financial stress on the family.

“It’s just constant. If I really think about the fact that we will never get a break from this, it becomes disheartening. It’s always there.” The challenge of the Type 1 parent is achieving balance between the constant worries and responsibilities of keeping a child healthy, and not letting Type 1 get in the way of a life well-lived, for everyone affected by it.

The challenge of the Type 1 parent is achieving balance… and not letting Type 1 get in the way of a life well-lived.

Through all this, Julie takes strength from her children.

Last year, for a project interpreting Martin Luther King Jr’s ‘I Have A Dream’ speech, Maddy focused on her dream for a cure of diabetes. “She researched how many people are affected by diabetes, and taught her class about it” Julie remembers. “She explained how finding a cure would change things for her when she is playing sports, or having a sleepover at a friend’s house.”

That’s a dream Julie, too, shares. She can only imagine how her life would change if a cure to Type 1 Diabetes is found: the money it would save, the gray hairs it would prevent, the nightmares it would stave away. But that’s not to say Julie Seabury resents being a human pancreas. Far from it: there’s just nothing she wouldn’t do for her kids.