Kelley O'Brien's hands shook as she stood in her bathroom, preparing for a date. It wasn't that she was nervous, or at least, she wasn't nervous in the way that…
As originally reported by WCSH6 Portland, Kate Woodside has become an internet inspiration to other kids affected by Alagille Syndrome. It’s common these days to hear complaints about kids spending…
Sam and Anna Beiler have not one, but two children with a rare degenerative disease that causes blindness. As of now, there is no treatment. Last month, however, the FDA…
Sixteen-year-old Ashrai Kumar has endured many nights of tossing and turning in pain due to ulcers caused from Behcet's disease. This chronic condition is seen prominently in Japan, Asia, and…
It had never even crossed my mind that there was a connection between my bruised skin, clicking jaw, Sally Hansen's strengthening nail polish, the blue skin on my hands in…
Virginia Ventura, 25, woke up one morning when she was 6, and found she was unable to move her legs. There had been no warning signs that she remembered, but…
Amanda McGrory's teammates nicknamed her work out "The Stairway to Hell." Depending on how you feel about intense work outs, that could make you want to run away screaming, or…
In Chicago, a panel of lawmakers and parents are fighting back after the loss of children to a rare disease. Shermane Jenkins lost her two-year-old son to the very rare…
Residents of a small Kansas town united together to post fliers and posters, all to raise awareness about a boy with rare disease. Eleven-year-old Peyton suffers from Xeroderma Pigmentosum (XP).…
Rare disease began shaping acclaimed photographer, Karen Haberberg's family years before she was born. Her parents had given birth to her older brother, who was diagnosed with Tay-Sachs. Tay-Sachs is a…
Three-year-old Ben Graham has grown an affinity for all things Police. He gets a thrill from their cars, their dogs and uniforms. But he's been suffering from neuroblastoma since his…
Twin three year olds, Marshall and Matthew, stole Linda Trapenier's heart the day she met them. She say she knew immediately "they were my boys." They're inseparable little boys, with…
Carol Town, 63, gave a big hug to surgeon, John Wallwork. They hadn't seen each other for 30 years. Carol attended a reception celebrating a professional accomplishment of Wallwork's, in…
Lily Mason, eight, saw her community uniting in support of her rare disease that only limits her eating to nine safe foods. The disease is called Mast Cell Activation Syndrome…
While other kids his age run amok in the wildness of their Terrible Two's, Lincoln Woodmass remains immobile. No running, no jumping and the possibility of never walking again. You…
Last week, science continued to break boundaries and save lives. In this case, a new gene therapy was used by doctors in Europe to replace the decaying skin of a…
Renee Smith deals with an unusual feeling and she might be the only person who does. She feels like there are drops of water dripping on the side of her…
Doctors, medical resources, health classes, and moms agree: exercise is one of the best things you can do for your body and health. It helps manage some chronic conditions, and…
A UK family was almost certain they'd lose their baby, but it was her giggle that filled them with hope. When she turned 2 years old, Poppy Smith underwent a…
Warwick Davis is a big name within the Star Wars community. Those that follow the movie universe religiously will know him for his role as Wicket the Ewok in Return…
Meghan Waldron, a 16-year-old girl in Massachusetts, disregards comments about her size, “Sure I’m small, but so are poison dart frogs!” Meghan runs track and country, plays violin and cello,…
Karen McLaughlin's exhibition Critical Path, hangs in at the Martin Batchelor Gallery until November, 30th. Her exhibit includes a combination of soft graphite drawings and bolder pastel renderings. The work is delicate,…
For now, Ann Marie Harte’s five-year-old son, Lewis, can still walk. He can no longer run, and he has a hard time with the stairs. The trampoline exhausts him, and…
Eleven-year-old Talia Duff finds herself in the rare situation of being one of only 22 people in the world to suffer from a rare disease. Last year, Jocelyn Duff received…
According to an encouraging letter she wrote in The FCS Foundation, the day that Melissa learned that her beautiful 3-week-old daughter had a rare disease- familial chylomicronemia syndrome (FCS), or lipoprotein lipase…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
