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Chronic Illness Q&As

Mixed Blessings

Multi-ethnic patients can have a harder time matching with a bone marrow donor. This nonprofit aims to change that.

Bone marrow donation can save the life of a patient with a blood disease like sickle cell, lupus or leukemia. But unlike blood donation, bone marrow donation requires a similar genetic makeup between donor and recipient, so mixed race patients can have much harder time matching with a donor because ethnic minorities are underrepresented in the bone marrow donation registry.

After Athena Asklipiadis, who’s part Japanese, Greek, Italian, Armenian and Egyptian, happened upon a bone marrow drive and learned about this problem, she was inspired to launch Mixed Marrow, a nonprofit that aims to register more diverse donors. She also helped create a documentary around the issue.

Folks talked to Asklipiadis about the importance of bone marrow donation and how Mixed Marrow is spreading the word. The following excerpts have been edited for clarity and brevity.

How did this issue come to your attention?

Blood-related diseases were on my radar because my aunt had battled lymphoma and passed away, so I was searching for some cause to get behind. That was around 2008, about a year after she passed away, and it was kind of serendipitous that I happened to run into a bone marrow drive at a Japanese cultural festival in Los Angeles.

The patient that was being highlighted was Krissy Kobata and this patient was half Japanese like myself. She was in her twenties at the time, so I found a lot of similarities with her story and mine. When I was reading some of the materials they had at this drive, that was the first time I was really aware of the fact that ethnicity played a large role in [bone marrow] matching. I registered try to see if I was a match.

At that time I was involved in a lot of mixed race kind of communities online, and I was really surprised that not a lot of people my age were really talking about it or knew about it. I was just shocked that nobody was really talking about Krissy or other people like her in California. Other mixed people were just kind of rare to get on the registry. I started sharing online, and it kind of compelled me to want to start my own organization.

.Athena Asklipiadis and other Mixed Marrow volunteers

So, how do you register as bone marrow donor?

There are two different ways you can register. You can either go to a live drive that’s happening–most states have a Be The Match recruiter or organizations that do bone marrow drives at public community events. You could also register online. You fill out the application portion on the website and they’ll send you a swab kit. Once you get the kit, you just swab the inside of your cheeks and send it back. The kit will then be processed in a laboratory and you will be added to the donor database.

What was your biggest challenge with Mixed Marrow?

I think our challenges are pretty similar to other recruiters around the world. It’s really difficult sometimes to try to outreach to the public who have no idea what being a donor means. They have a lot of misconceptions that it’s super painful or that you’re awake during the bone marrow operation. We don’t want to coerce or like pressure somebody register if they’re not ready or they’re not educated enough.

We do our best to try to educate people and we’re very honest with them. If you are called to be a matching donor, you will either be donating marrow (a surgical procedure under anesthesia) or non-surgically when stem cells from your blood are taken from your arm called PBSC donation.  In both cases, your body will replenish the donated cells within a couple of weeks.  And most donors are able to return to work and normal activity very quickly. Dispelling myths is probably the biggest challenge and that’s why I created a documentary.

Tell us about your documentary, Mixed Match.

My professional background is actually in entertainment and broadcasting, so I felt that media was a good way to share these stories. I pitched the idea to Canadian filmmaker Jeff Chiba Stearns. I didn’t know him, but I had been familiar with his work. I just sent him a blind message on Facebook. I wanted to create something that educated people but also tapped into the real life stories of the patients that are young and lively. I wanted show that these are everyday people who deal with [blood] disease and it could be curable at the hand of a stranger.

It was about six years to complete the film. So Jeff and I took over 200 hours worth of footage [the finished film is 96 minutes]. Thankfully, last October we were able to release it. It’s screened at over 30 film festivals so far. Every screening has a bone marrow drive, so people have the opportunity to sign up.

How have audiences responded?

We’ve won several awards, audience choice award and jury awards, for the film. The most important thing though above all that, is that we’ve able to register several groups of donors to the registry that have either been compelled at the time of seeing the film or they signed up online later.

Besides from the documentary, are there other ways that you’re performing outreach?

We’re all volunteers completely, so we do a lot of outreach online. We do drives at different events, and then we do a lot of talks where we’ll go to a college campus, and talk about this issue with cultural club or different ethnic groups. We just let them know how important it is and that minorities are really under-represented [on the bone marrow registry]. The film has been the major focus in the last year just because it’s been a really good tool at showing people the stories without having to do so much heavy reading.

Have you matched with anyone?

No. It’s very, very difficult to match with somebody. It’s about a one in 500 chance you’ll be called, and then you would have to go through a series of others test to see if you are a perfect match for somebody. Unfortunately, I’ve never been called. I’ve been registered since 2008, but then there are people that get called two months after being registered. I’d totally be willing, but I’ve not had that opportunity yet.

Is there anything else that you’d like readers to know about registering or about Mixed Marrow?

This type of donation is not at the mercy of just doctors and research and science. It’s really based on humanity, and just being willing to help somebody. So, I just think that there is something really beautiful about that, that we have a cure within ourselves. A lot of people are afraid to do for a stranger or someone they don’t know, but if you put yourself in their shoes or put your mother or your sister or somebody in a patient’s shoes, you would hope that whoever the stranger is in the world would answer that calling and be on the registry. This is just one really unique way of that we as average people can do an extraordinary thing for somebody.

Want to register as a bone marrow donor? Search for an upcoming drive near you or sign up online.

Chronic Illness Genetic & Congenital Diseases Profiles

MS and Sickle-Cell Can’t Keep This Motorcycle Mom Down

Rona Wiggins was told it was too dangerous for her to get pregnant. But there's more than one road to becoming a mom.

Rona Wiggins’ childhood was filled with limitations: Don’t fly on a plane. Don’t ride roller coasters. Are you sure you want to be a cheerleader? Isn’t that too strenuous?

Then there was the most disheartening limitation: You must never birth a child because it might kill you.

Rona Wiggins with her beloved motorcycle.

 

At first, Wiggins accepted the limits placed on her by caregivers. As a girl, she didn’t realize there were other people like her, with sickle cell disease: a debilitating blood disorder that contorts red blood cells into a sickle shape. The shape hinders the supply of blood, causing a lot of pain and a crisis that usually has patients hospitalized.

According to the doctors she’s seen through the years, Wiggins, now 43, isn’t supposed to be here. She was given “death dates” at 13 and then 21.

Today, she’s living well with sickle cell disease, whether she’s helping others like her through patient advocacy, or riding her beloved motorcycle. The last time a doctor proclaimed she wouldn’t live long, she defied that prognosis and celebrated with an “I’m still here” party at age 35.

But her journey is certainly filled with twists and turns. Soon after her party, Wiggins was diagnosed with relapsing-remitting multiple sclerosis.

“I was angry with God. Was I not a good steward of sickle cell?”

“I was angry with God. Was I not a good steward of sickle cell?” she remembers asking after the MS diagnosis.

Still, Wiggins has tried to remain resilient. She is determined not to let these conditions stop her from becoming a mother.  The Virginia native who lives in Murrieta, Calif., spends her days preparing to foster, then adopt, a child.

Becoming A Mother With Sickle-Cell

At 18, Wiggins experienced an ectopic pregnancy miscarriage. Later, she held off on having children until she found the right partner.

“As a child, I had dreams to be married by 21 and have a child by 23 and the next child by 25 but that was not my story,” she says.

But for several years, motherhood was tugging at her heart. She considered adopting a child, so she contacted an agency to see if she was qualified as a single, gainfully employed  woman living with sickle cell.  All was good, except for the sickle cell.

Rona staying sassy in the hospital.

“I was told that due to the nature of my disease I would need an extensive care plan in the event of my untimely death or untimely hospitalizations,” she says. “I had family but they were busy taking care of my ailing grandmother and they did not have room for anything else. So, I abandoned my hopes of adopting a child and prayed for a husband.”

Then, at 39, she married Antwoine Wiggins and became an instant mother. He was already the father of six, including one child who was deceased and one who was adopted. When the couple moved to California, they brought his son with them, and a daughter later joined.

Before the two teens graduated from high school, the Wiggins began talking about options to expand their family.

Roadblocks

The Wiggins explored surrogacy, but with Rona’s condition, and her husband’s G6PD deficiency (which can cause anemia in certain situations), they’d have to do a lot of “tinkering with the egg and the sperm to get a child without these illnesses.”

The Wiggins family.,

“I even asked the oldest daughter if she would be willing to carry our child but she is having such a hard time with our second grandchild that she said she will not be having anymore,” Wiggins says.

So they considered adopting a newborn from a mother who was giving her child up for adoption. However, they were uneasy about the potential for the mother to change her mind. It was a situation they weren’t sure they could handle.

The next logical option was becoming foster parents with the goal of adopting.

“With that option, we would know for sure that the parental rights had been legally terminated and that the child would be ours,” Wiggins says.

The process has been long and tedious, filled with state clearances, fingerprints, tuberculosis tests, physicals and classes.  In classes, the coupled learned about discipline without hitting, mental health issues, effective communication, transgender and sexual issues in children, water safety, and CPR.

But the end is now in sight. They expect to have a child in their home no later than April.

“I’m looking forward to the heartaches, the anxiety and the sleepless nights,” she says. “But nothing is guaranteed.”

Keeping Faith

Meanwhile, Antwoine was recently deployed.

“With or without my husband, my desire to be a mother and raise a child has been in me and continues to burn in me,” Wiggins says. “I have the gift of helps and I know that raising children can be stressful but when you have a loving husband, supportive parents and God on your side, you can accomplish anything.”

Given her dual diagnosis of sickle-cell and multiple sclerosis, Wiggins notes there may be days where her limbs don’t work right, where it will be hard to make her appointments with doctors and specialists. But to hear her tell it, these are challenges for every parent.

“I keep encouraging myself knowing that there are people in the world who are worse off than me yet they are successful parents…”

“I keep encouraging myself knowing that there are people in the world who are worse off than me yet they are successful parents,” she says. “Tomorrow is not promised to anybody but all we can do is do the best with the skills, knowledge and abilities in which God has bless us with.”

She adds, “In all of my anxiousness, my disappointments, my stress, my range of emotions, my heart continues to long for a child that can join our family and can make memories for a lifetime.  I do not want to be an old lady with this desire still burning in my heart.”

Genetic & Congenital Diseases Q&As

What It’s Like To Live With Sickle-Cell

The blood disorder, which primarily affects people of African descent, shows the ways in which racial prejudice can cause the health care system to break down.

When Damian Jackson was a young man, some lawyers helped his family out. “I admired them,” he remembers. “They were smart, and they helped people out. I thought it would be a good thing to go into if I could.” Now, Damian’s a litigator with close to two decades’ trial experience and around a hundred jury trials to his name.

Damian’s desire to help others out doesn’t stop when he leaves the office. The Philadelphia man spends his free time speaking up for sickle-cell sufferers, helping them access the health care they need during a crisis, and working to raise awareness of a disease that’s largely misunderstood by medical professionals.

Damian Jackson has had sickle-cell disease his entire life.

Damian says he’s lucky. After all, he’s had fifty years of pretty good health. This could be attributed to a balanced diet, enough rest and regular exercise. Or perhaps it’s due to his parents, whose experiences with Damian’s elder sister, also diagnosed with the genetic condition at birth, shaped the way they raised him.

However, despite his good fortune, the defense attorney hasn’t escaped his share of crises – the debilitating bouts of pain experienced by sickle-cell sufferers. Crises are caused when oxygen-carrying red blood cells become distorted, forming a sickle, or crescent shape. The pain is immense, and during his last crisis Damian was unable to do anything else than reach for the phone and dial 911, before spending three days in the hospital.

But these episodes have been rare, and despite a few aches and pains, Damian just gets on living the best life he can: lifting weights and running on the treadmill each morning, going to the movies and spending time with his wife of fifteen years, Dionne. He’s recently taken up golf, and started going to yoga classes.

Damian’s softly spoken and polite as he explains how sickle-cell disease has shaped, but not overtaken, his own life, and how important it is to raise awareness of the condition within the medical community.

Sickle-cell disease varies in its symptoms and severity. How has it affected you?

I am very fortunate that my case has been mild for the most part throughout my life. Thankfully – I’m knocking on wood as we speak – I haven’t had a crisis situation in about fifteen years. That’s very unusual. I’ve had other issues with my sickle-cell, some aches and pains where I think, okay, I need to sit down for a while, but not a full-blown crisis where I’ve had to go into the hospital and be under a doctor’s care.

I know some people who have the disease who are totally disabled, they cannot hold down a full-time job, they can’t do most things for themselves because they have such frequent crisis situations that it affects their day-to-day living.

I did have a wound on my ankle this past year that was very slow to heal, doctors attributed the slow healing process to my sickle-cell, believing there wasn’t enough oxygen getting to that area. That’s a side effect but not something I’d consider as a crisis.

What happens in a crisis?

Normally a red blood cell is circular, but with a person with sickle-cell, theirs are in the shape of a sickle. What happens is from time to time, these cells will start to clot in a certain area, on a blood vessel, and that’s what causes the pain. This is known as a crisis, and it’s an episode of pain, often very severe. Normally it would cause you to receive intravenous pain medication, and be in the hospital for several days, possibly weeks.

What triggered your last crisis?

I’ve always try to say what factors triggered a crisis—was I running myself ragged, did I do anything extra—and I’ve never been able to come up with a cause. I’ve talked with others, and repeatedly people will say I wasn’t doing anything out of the ordinary, it just happened. It’s really unfortunate what happens with sickle-cell it just happens.

My last crisis was about fifteen years ago. Every person who has sickle-cell has an area on their body where they have their crisis, and for me it’s always been my back. I was in such excruciating pain I couldn’t do much more than call 911 and the emergency rescue had to come and take me from my apartment to the hospital because I couldn’t walk at that point. I was in hospital for three days.

Is your good health down to your lifestyle, or is it simply luck of the draw?

I attribute it to the way I have lived. I was diagnosed at birth, and my older sister has sickle-cell disease too, so my parents knew from an early age that there were certain things they could do early on that could potentially help me, like getting enough rest, having a proper diet, things of that nature. Since I had those at an early age they have benefited me throughout my lifetime.

I try to maintain good eating habits, eating lots of fruit and vegetables, I don’t sleep a lot, I never have, but I do try to monitor that and make sure I don’t run myself ragged.

Is there any stigma associated with sickle-cell disease?

One of the big problems with sickle-cell disease is that you’ll have an episode of crisis and go to the hospital and run into a doctor who’s not familiar with you. And you tell them that you’re in pain, and doctors are automatically apprehensive about giving you pain medication. So they might not medicate you enough to relieve you enough, which means you’ll experience even more pain.

Couple that with the fact that SCD primarily affects people of African descent, so you have these African Americans going into the ER seeking pain medication and you get a doctor who’s not familiar with the disease. They can’t give you an objective test like taking your temperature to see how much pain you’re in, and they’re somewhat apprehensive. They have whatever stereotypes built in so they give you the least amount of medication possible, then they want to put you back out of the hospital onto the street.

How do you think sickle-cell disease would be treated if it was a Caucasian disease?

I point to Tay-Sachs disease which does affect Caucasians but it’s even more rare. But when someone with this presents at the hospital the medical community has a greater understanding, and they’re not stigmatized as drug seekers or anything else.

A friend of mine with sickle-cell was in Texas, and went into crisis pain. This person is in the medical community, they were actually working at the hospital where they went into the ER. The hospital staff knew who they were and they still treated them the same way just because they were an African American, presenting with sickle-cell pain. The doctors actually refused to give adequate pain medication and medical treatment until my friend’s home physician got in touch with the doctors and explained what was going on. I thought that was unbelievable. They wouldn’t take the word of their own colleague, who was a medical professional, because they had a lack of understanding.

Sickle-cell patients just want to get pain relief, and if you can stem the tide of that pain early, we can be out of your hair in a much shorter time.

Sickle-cell patients just want to get pain relief, and if you can stem the tide of that pain early, we can be out of your hair in a much shorter time. Unfortunately the medical community doesn’t understand that, and with trying to piecemeal the pain away, they just extend the whole process.

Usually if I go into the hospital where doctors and staff aren’t familiar with me, I know I can call someone in the hospital administration and talk to them, and they’re going to exercise a certain amount of power on the doctors who are treating me, so I can get what I need. But your average patient—who will also be in pain which affects their ability to advocate for themselves—isn’t going to be able to do that.

As carriers, did your parents ever express guilt over passing the sickle-cell trait onto you?

They’ve never expressed it but I believe it is there. Just certain conversations I’ve had with my mum over the years. She’s never come out and said “I feel so guilty you have the disease” but she has said she will always worry about us. When we were younger, if you catch a cold, a head cold, a bad cold that can sometimes trigger a crisis, your body gets dehydrated, your immune system will get distressed. As small children, going to elementary school, we would get sick a lot. So my mom has said in the past she would worry, sometimes she couldn’t sleep at night sometimes when we were sick because she was so nervous and so worried about us.

Is this same concern a reason you have chosen not to have children?

I didn’t want children. I never wanted to bring somebody into this world who would have to deal with the pain that I went through. I thought, I can’t go through the mental gymnastics while I’m dating and have somebody fill out some type of genetic card before we got serious, I just hoped I would meet someone who shared those same views, and if we did in fact want children we could possibly adopt or do something else. My wife has never wanted children either, but for her own reasons.

How did you approach talking about SCD with your wife, when you were dating?

Sickle-cell’s a lifelong disease. If you’re going to be with your life mate they’re going to need to know how to handle it. That was one big thing I talked about with my wife, when we were dating, that if I ever go into crisis and I need you to speak for me, this is what you need to do. I educated her so that she would know if in fact that time would come and I couldn’t advocate for myself that this is what I’d need.

Sickle-cell’s a lifelong disease. If you’re going to be with your life mate they’re going to need to know how to handle it.

Fortunately, I’ve been mostly healthy since we’ve been married, but I have had pneumonia once, she had to step in and be there for me for that,

How much awareness is there of sickle-cell disease within the African American community?

Most members of the African American community either have a family member or know someone with sickle-cell disease, so there is awareness. When my sister was diagnosed my mom really had no clue what the disease was or anything else. She told me about talking to her friends and very few of them knew anything about it until she spoke about it with one of her friends who actually had the disease as well, but back then it was so stigmatized that nobody really spoke about it.

What advances would you like to see for sickle-cell patients?
I’d like to see much greater awareness. Besides the doctors being apprehensive about you receiving the pain medication, a lot of doctors don’t learn about SCD in medical school. I have heard from doctors that they maybe spend a few minutes on SCD throughout their whole educational career, unless they go into haematology. So many doctors are ignorant of the disease.

I also think something that isn’t emphasized enough is within the sickle-cell community is to really think hard about family planning.

People date and fall in love, and a lot of people don’t know they have the trait. Or one might have the disease and the other the trait. But by then, they’re already in love, and about to get married. At that point, what do we do? Because the person with the trait, and the disease link up. Most likely, depending how many children they have there’s a greater chance they will have a child with the disease and not just the trait. So that’s something people really need to think about.

How  do you reconcile living with a reduced life expectancy?

You can’t plan for everything. But I try to live as normal a life as possible and really not dwell on that. I try to eat right, exercise, spend time doing the things I enjoy outside work, and really hope for the best. I’ve understood from an early age that the life expectancy for somebody with sickle-cell wasn’t very promising. But with the advances in medicine and staying on top of things, being an advocate for my own personal healthcare, I think I’ve done all I can do to make sure I have the longest, best life I can.

Genetic & Congenital Diseases Q&As

Painting In Pain

Haiti-born artist Hertz Nazaire explains why he rejected commercial success in order to bring visibility to those, like him, suffering from Sickle-cell disorder.

When painter Hertz Nazaire reflects on a childhood spent with Sickle-cell disease — a blood disorder which increases the likelihood of anemia, bacterial infections, and chronic fatigue and pain — he remembers not being allowed to suffer.

Hertz blah with his art.

Hertz Nazaire, standing in front of his art.

He poses a memory not immediately unusual: adults crowding around a kid with a chronic condition, convincing themselves that recovery is possible and even imminent. What’s forgotten is the child that carries the worry of these well-meaning adults, these anxiety-ridden caretakers search for a solution to something that’s embedded in your genome. Nazaire was a kid whose active pain haunted those closest to him. Suffering wasn’t an option; it pained the adults who planned to fix it.

Now 42, Hertz joined us at Folks to talk about his art as an expression of pain, and why more artists and public figures don’t talk about their chronic conditions.

 How did you get into art? I understand you grew up in Haiti, and I’m interested to hear about your early influences.  

I was born in Port-Au-Prince, Haiti and grew up in a section called Carrefour. As a kid, I was often sick and I used to sit inside and watch these trucks that worked as taxis called Tap Taps. They had these very colorful designs and murals on them, so it was like having paintings on the streets and moving all over town. It was inspiring. Some had landscape paintings and others had depictions of Jesus or something religious. It was the most colorful thing I’d ever seen. Cars in the ’70s and ’80s were plain, but these were like tropical foliage moving under the sun, and it was uniquely Haitian.

Tell me a bit more about your childhood and what brought you to the United States.

My mother left Haiti to find work in the United States when I was still a baby. My childhood was difficult because I didn’t only stay with one family. My mom sent money back to the people that cared for me, but because I was sick each family would eventually feel overburdened and my mom would have to move me. Throughout my childhood, I never had an outlet where I could prove that I was capable of living a normal life.

Eventually, I moved to Bridgeport, Connecticut when my mom got married. During the four years that I lived with my mom before she died, she cared for me. She would get me up at 3:00 AM if I was having a crisis and rush me to the Emergency Room. You have to understand, though, that it was embarrassing to have to wake up your mom because you’re crying at night and sick with a painful crisis. Often she would be at my door before I had to say anything. She had to go to work most mornings but would spend a few hours at the Emergency Room just to make sure I was cared for.

Some of Nazaire's Haitian-inspired paintings.

Some of Nazaire’s pain-inspired paintings.

How did your mother respond to your illness in general?

In Haiti, people are very religious. If you have an illness, they say that you must have faith and spend time in prayer to be healed. With the culture of voodoo, a sick child meant that someone had sent a curse to the family. When I moved to the United States, this legacy followed me. A friend of my mom’s said that I needed to go see this lady named Amazing Grace. She was a healer that would hold conventions where people in wheelchairs or with various illnesses would show up to be healed. She would speak and then lay hands on the people, pushing them to the floor and saying that they were healed in the name of Christ.

In Haiti, people are very religious…With the culture of voodoo, a sick child meant that someone had sent a curse to the family.

And this happened to you?

Yeah, as a child, it was an amazing experience. I remember that after the woman touched me I fell down. My mom was crying, and this lady told my mom that I was cured. For the next ten months, every time I got sick I would bear down and keep it a secret. It was heartbreaking because I was suffering but I couldn’t tell my mom. I wanted so badly for her to have this miracle. I wanted her to have a respite from my illness.

Remind me again how old you were?

I was about eleven.

After something like this, what does an eleven-year-old think about the world?

You realize that you will suffer, but people won’t accept your suffering. They want an easy answer, a magical solution. As a kid, every family I lived with had different beliefs. One of them was Protestant, one was Baptist, another was Catholic. But when I was sick, they wanted to pray for me. People don’t understand that this is in my DNA. Sickle-cell is part of my reality.

Do you think they meant to explicitly ignore your suffering?

Despite his chronic fatigue, some of Nazaire's works are extremely large.

Despite his chronic fatigue, some of Nazaire’s works are extremely large.

Again, they wanted to find an easy solution. It was hard for them to look at a child that is hurting and not be able to do anything about it. They felt helpless but wouldn’t acknowledge it. The thing about Sickle-cell is that it’s genetic. It takes two parents that have the trait, and so there’s a guilt factor that’s embedded here. I didn’t want my mother to feel bad, and that was a heavy burden for a child to carry.

You seem to have spent much of your childhood ensuring that others did not suffer because of your condition.

With Sickle-cell, you have to carry everyone’s burden. My mom felt a lot of guilt because of my illness and for leaving me in Haiti, so it was difficult for me to tell her what I went through. I would see the pain in her eyes and understand that this was not something I could tell her.

What are some of the routine challenges of living with Sickle-cell beyond the emotional trauma?

After my mom died and I graduated from high school, I had to work three jobs to pay for art school. Eventually, though, I had to drop out. One of the aspects of Sickle-cell is that less than half of your blood cells work properly, and you can’t get the oxygen supply you need to your tissues. The consequence is that your blood cells die off faster than normal, so you are always anemic and weak. Just getting the energy to get up and paint is hard. Each day you have to work with half the fuel of a normal person, and if you push too hard you have a crisis and you end up in the hospital for two weeks. For me, it’s like a cycle of rebirth. I make it to a certain point but then have to start completely over again. You must learn how to be steadfast and bear it.

For me, [Sickle-cell] is like a cycle of rebirth. I make it to a certain point but then have to start completely over again.

How has this affected your art?

Well, I went blind for two weeks when I was twenty-five and eventually lost my vision in my right eye. It has made drawing difficult. To be an artist and not be able to see is incredibly hard, and I didn’t paint for three years. Now I paint large paintings because working in details is a challenge for me.

Also, I don’t live in New York, and I’m not trying to commoditize my art or turn it into a brand. The truth is that I can’t; I don’t have the energy. What inspires my work is a desire for people to have a sense of compassion and an awareness that people with Sickle-cell are suffering and you can’t just pray it away. You have to do something. You have to act, even if you believe in God. You still have to help these people get over their pain.

Pain is a theme in much of your art. You actually describe yourself as a PAINter. Could you expound on this?

When I paint about Sickle-cell there is an incredible burden because I really want this work to reach someone. What I’m working on right now is called the Tapestry of Pain. It’s a large mural that features the portraits of people that have passed away from, or continue to live with, Sickle-cell. It’s difficult to even finish this because these people have either died or are still suffering. I have a feeling of a deep respect and responsibility to honor these people.

Do you have a sense that your posture towards art separates you from other artists?

I have seen the life of the artist. A close friend of mine that grew up with me in Bridgeport is now a prominent artist in New York and sells his paintings for 50 thousand a pop. He tells me that I basically pigeon-holed myself because I did all this Sickle-cell work and no one sees me as a serious painter. But so be it. This is the path I have accepted. Granted, I wouldn’t mind selling my work for 50 thousand dollars, but I have embraced this path of making Sickle-cell pain visible.

Is it ever tempting to want to leave Sickle-cell work behind?

I go to many meetings where I give motivational talks to young kids that have Sickle-cell. On one occasion, there was a young boy that wasn’t able to make it and his social worker asked me if I would like to go to the children’s hospital and see him. I agreed and visited him for an hour. We talked about the Japanese animation that we both liked. He also drew about his experience with Sickle-cell and said he was inspired by my art. He was just like me. By the time I took the train home from the hospital that night, the kid had died. This is what makes Sickle-cell real. If there’s a child out there that is still suffering, it’s a worthwhile thing for me to do.

I have seen a lot of artists on something like PBS talking about their art work. I’ve also been on PBS, but I was sitting there talking about pain. That’s my journey.

Nazaire at work on one of his paintings.

Nazaire at work on one of his paintings.

Why do you think more public figures don’t talk about their Sickle-cell? Why not fight?

There are the politics of weakness. You don’t want to be perceived as weak. The other aspect is the shame and the guilt. Nobody wants to feel ashamed because they have this condition. If you were a kid that was constantly treated differently, even by your own mother, wouldn’t you want to hide, too? You want people to see what you’re capable of, not what’s holding you back. In a way, I can understand why other artists might hide. You want people to see you for what you create and the vision you have as a human being. Instead, they see a disease.

You want people to see what you’re capable of, not what’s holding you back.

What’s left for you?

I recently entered an art contest for rare diseases.  The winner will get their art shown in Washington DC on Capitol Hill during Rare Disease week, which is March 1st 2017. To vote for my Sickle Cell art just go to www.sicklecellvotes.com. This is just part of finding more ways to give Sickle Cell Disease a voice.

Honestly, I don’t know if my art can make a difference, but it’s part of the puzzle.  There is nothing else I can give to this world. The only thing that I can do is create this tapestry and hope that when it is seen, it will touch people that have the power to make a difference. A cure is possible, but someone must demand it.