At 17, she suffered excruciating chest pain, then collapsed. That is when Tess Dunn got the explanation that she had a hole in her heart. Born in the Philippines, Tess was…
Can you and your friends handle the Lyme Disease Challenge? Challenge someone and find out! Take a bite. Share a fact. PASS IT ON! (The funnest part is seeing your…
Global Genes tells us that Bonnie Wheeler spent the first 40 years of her life enduring the symptoms of undiagnosed Ehlers-Danlos syndrome, which is a grouping of connective tissue disorders.…
5 Preguntas que estás cansado de oir cuando tienes ICV: "Así que tienes problema digestivos Y respiratorios? Sí. Ambas cosas. Confía en mí me quedaría con uno si pudiera.…
The HAE community cheered in July of 2015 when another new therapy was approved by the FDA to treat acute HAE attacks. Now, the pharma company has another reason to cheer. The…
The right doctor and the right hospital can make all the difference when your child is diagnosed with a rare (and frankly terrifying) medical condition. That’s what London couple Sukhi…
Concern versus Worry We teamed up with Patient Worthy Acromegaly Contributor Rob to talk a little bit about two "conditions" that may not be considered "actual" diagnosis' by the medical community.…
This is part 2 of Marian'a journey, click here for Part 1. After some genetic testing, we eliminated the most common, Cruzons Syndrome, so we proceeded with some more testing.…
Dear Ehlers-Danlos Syndrome, I have been living with you my whole life, but you started to show your ugly face 5 years ago. And during all that time I couldn’t…
Researchers at UCSF are searching for volunteers to participate in a clinical trial studying the effects of Deep Brain Stimulation on isolated/primary Dystonia. To participate you must meet the following…
What is a strawfie? A selfie (picture of yourself) while breathing through a straw. You've met Cassie Hawthorne in Patient Worthy's write up Model with Cystic Fibrosis Bringing Awareness to Disease earlier…
A new study by pediatric researchers at Harvard Medical School and Boston Children’s Hospital shows that about one in 10 parents catch mistakes that physicians miss. The study suggests that parents and…
Hannah Kiresuk, 20, is a noted high school skier who has spent much of her free time going downhill. At 16, she was diagnosed with myasthenia gravis, a rare disorder…
When most people think of Lyme disease, the first thing that comes to mind is usually a big, fat tick (immediately followed by manic itching). What’s harder to wrap your…
Are prime-time TV medical-dramas truly distorting patient expectations? We don't think so. Do you? Medical dramas aren't the only ones in today's television circuit that are incorporating rare diseases into plot lines…
Above photo by Sandro Georgi Photography Rob has led an interesting life to say the least. He was in the navy for 20 years and has lived in Florida, Alaska, Diego…
It's time to make some faces for Lyme. Do the Lyme Disease Challenge to spread the word about Lyme and have fun making funny faces with your friends! To learn…
PW Contributor and caregiver Gloria Szanto, shares with us how she is able to live a healthy, family-filled, yet busy life while caregiving for her husband. Hi, my name is…
I LOVE pancakes but part of having chronic Lyme means I have a pretty restricted diet. Additionally, I almost never have energy so I need something that will give me a…
El hecho de que Burger King abandonó "hazlo a tu manera" como consigna no significa que tu tengas que hacerlo! Una vez diagnosticado, viviendo con inmunodeficiencia variable común (ICV) requiere…
There Is Hope For Those With HAE. The more you know, the more normal of a life you or your loved one can lead. Check out haea.org and don't let HAE…
From the comfort of the @PatientWorthy couch, we caught another RARE feature on TV! Chicago Fire Fans Won't See Otis Fighting Fires Until His Platelets are Balanced A few episodes…
For 21-year-old Tanner Pyeatt, the future is uncertain. Diagnosed with Duchenne muscular dystrophy at the age of four, he gradually lost the use of his legs and has been wheelchair-bound since age nine.…
As most readers of this site are probably aware, a “rare disease” is classified in the United States as one that affects fewer than 200,000 people. It’s estimated there are…
Parker Wade is more than a cystinosis patient; he’s a Buckaroo, too! “Mothers of Buckaroos,” a Texas organization, banded together to raise funds for Wade, who received an expensive kidney…
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