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…
In the video above, PW Contributor Rob tells us about working to get an acromegay diagnosis. As he describes: "Acromegaly, unfortunately, a lot of times doesn’t get diagnosed until the…
May 16th is HAE Day. Participate in raising awareness by joining the campaign to cover the world with smiles.
La edad de las máquinas, estamos en ella! La tecnología se ha hecho cargo. Hace algunas décadas, cuando alguien hablaba de la tecnología, pensado en Orwell novela 1984, las películas…
When you think of 14-year-old boys, what do you think of? Rough-housing, raging hormones, an abundance of energy, maybe a little teenage rebellion? Often that’s the case, but Cooper Wilson,…
If you have a rare disease with no cure, it’s important to live your future today. Bradon Coy, 10, took that advice by travelling all the way from the United…
Sarcoidosis is caused by tiny granulomas forming most commonly in the lungs or lymph nodes and eyes. Doctors believe it is the result of the immune system trying to fight…
What makes YOU tick? Is it Lyme disease? It was for Jenny Buttaccio, who suffered for years with "an ever-growing list of strange symptoms" without answers. Until finally, a doctor…
An on the Bel Marra Health website (you can check it out here), talks about the difference between ankylosing spondylitis (AS) and “just back pain.” (It also says that there may…
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