Archive for category: Genetic & Congenital Diseases

The Boy Who Refused To Disappear

In Sub-Saharan Africa, Peter Ogik is educating communities about people with albinism.

Spina Bifida Couldn’t Stop This Elite CrossFitter From Chasing Her Dreams

Being smart about strength training has made it possible for Lindy Barber to compete at a high level, despite a host of spinal conditions.

What It Takes To Fight A Stealth Killer

When her husband got sick with a rare genetic disorder, Marie Warder spent her life waging war on hereditary hemochromatosis.

Folks Video Story: Painting In Pain

"I don't like putting my pain in my work a lot," says painter Hertz Nazaire, who has Sickle Cell disease. "But it sneaks in there. It can't be helped."

Wheelz in the Air

To Aaron Fotheringham, founder of Wheelchair Motorcross, spina bifida isn't a curse. It's an opportunity to blow people's minds.

Singing At The Top Of Her Lungs

Julia Rae may have cystic fibrosis, but that hasn't stopped her from being a rising star in the worlds of singing, acting, and pageantry. Oh, while running the occasional marathon besides.

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.

Spider Hands

How Marfan Syndrome killed my music career, replaced it with a writing career, and helped me see the connective tissue flowing through everything.

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.

Fighting Cystic Fibrosis With A Rumble And A Roar

When his condition was at its worst, Paul Underhill designed his own nourishment drink to prevent himself from starving. Now, he sells his drink across Canada to help others.

Riding, Running, and Swimming To Beat A Fatal Genetic Disease

Justin and Lexi Clark aren't just in a race against giant axonal neuropathy, the disease that could kill them. They're in a triathlon.