Tag: patient stories

A total of 123 posts are filed under patient stories
How the Internet Helped Me Cope With My Rare Disease (idiopathic angioedema and chronic urticaria)
I’ve never been one to crave optimism. I didn’t immerse myself in the triumph-over-adversity messaging of the Chicken Soup for the… Continue Reading
Mila Fights 15q24 Microdeletion Syndrome
Limp noodle, lazy bones, Mila bird, noodle bear…those were just a few nicknames we had for our sweet baby. She loved music. She loved… Continue Reading
Mother and Artist Help Raise Funds for Global Genes Through Etsy Shop
Marie Stanton of New York is doing whatever she can to support World Rare Disease Day this year. That includes using her Etsy shop to help… Continue Reading
Raising a Medically Fragile Child: Zoe with Congenital Central Hypoventilation Syndrome
There are more than 6,000 rare diseases in the world, and approximately one in 2,000 people have been diagnosed with one. Every person… Continue Reading
“Don’t Let Disease Be Your Grinch This Christmas,” Says Mother of Patient with Batten Disease
With the holidays approaching, the children and I have decided to decorate our front yard with characters from our favorite Christmas story:… Continue Reading
Mother of Child with Juvenile Myositis Connects with Other JM Families over Holiday Fundraiser
Last week my five-year-old asked me why he was sick. He wanted to know why there was no cure and why this had happened to him. I had no… Continue Reading
Rare Disease During the Holidays: How Much Can You Handle?
by Janet Mills My first Christmas season knowing I had CADASIL (a rare genetic neurological disease with no treatment) was bittersweet.… Continue Reading