fbpx

Entries on Rare Diseases

Applying for disability wasn’t an easy decision for Erica Carrasco, the migraine blogger behind Achy Smile. She’d been a go-getter her whole life, but had suffered from increasingly severe headaches as an adult that eventually derailed her career. There was nothing left to…
Read More »

Pontocellebellar Hypoplasia Type 1B: A Rare Genetic Disorder Can’t Stop This Family

Margaret Miller knew early on that something was off about her redheaded baby girl, Gwen. As a one-month-old, she still wasn’t making eye contact. Underweight at birth but seemingly healthy at first, Gwen continued to miss milestones as she got older. She had…
Read More »

We’re seeking people who live with narcolepsy who are interested in sharing their personal perspectives in an upcoming advisory board.  Learn more about this opportunity to share your story! We all get sleepy during the day sometimes. A long meeting might lead to…
Read More »

6 Things You Should Know About Life with Hereditary Angioedema (HAE)

We deliver new health stories each week! –>   Imagine visiting Yankee Stadium and being selected and singled out of the entire crowd. Being born with Hereditary angioedema (or HAE) is a similarly rare event. It’s so rare, in fact, that many doctors aren’t…
Read More »

Rare disease

Q&A: Outlifting Addison’s Disease Tyler Brown is a 28-year-old biomedical engineering student who lives in Columbia, Missouri. When he isn’t busy taking a full load of classes and conducting research, you’ll find him enjoying walks with his wife, lifting weights, reading philosophy, watching…
Read More »

Couple with Spina Bifida Build Life Together

Couple with Spina Bifida Build a Life Together Kerry and Dan Wallace have a message for people living with spina bifida and other disabilities: Your limitations don’t define you. “There are very few things left that are not able to be accomplished by…
Read More »

3 generations of cavernous angioma

When Julie DeMichiel was 10 years old, she had an episode of severe headaches that lasted for about a week, followed by extreme weakness on the right side of her body. At the time, in the 1960s, there was no such thing as…
Read More »

Urea Cycle Disorder

Lauren Morales showed no signs of a Urea Cycle disorder (UCD) until she was four years old. She and her family were at her grandmother’s house around Christmas, when her mother noticed she wasn’t acting like her usual self. Normally filled with boundless…
Read More »

Mothering a Butterfly Child

Imagine your skin is so fragile that just rubbing it causes it to blister. And not just the skin you can see. Eating can cause the skin in your mouth and throat to blister as well. Sounds terrible, right? This is what life…
Read More »

We connect people with opportunities to share their health experiences and opinions.
Health Topics