There's an old fable that reminds me, in a way, of primary myelofibrosis, or PMF: A shepherd is in the desert with his camel, and as night approaches, he pitches…
Anyone living with Kallmann syndrome (KS) faces multiple symptoms: no sense of smell delayed puberty possible infertility complications affecting the kidneys, ears, heart, eyes, and parts of the brain Patients…
Current treatments for cervical dystonia provide inadequate relief to many. Dystonia twists people and leads to strange postures, involuntary movements and pain. It affects men, women and children. Check out more…
Rare Disease knows no party affiliation! Let’s pass the 21st Century Cures Act in the lame duck session ! The Everylife Foundation Action Center is calling for your action on November…
When that moment happened, and again I don’t know when it happened, but when that moment in my head just clicked and I stopped being, or stopped putting myself in…
I’m impressed of with the direction of the Fabry Support & Information Group (FSIG) and the offerings they have. In August 2016, they had a Fabry Family Get Together at…
Talking to the parents or family of a child with a serious illness can be nerve-racking and uncomfortable. Sometimes avoiding the family can seem easier than facing a difficult situation.…
Serendipity (n): la aparición y el desarrollo de los acontecimientos por casualidad en una manera feliz o beneficioso. Como muchos de ustedes probablemente saben, el viaje a un diagnóstico cistinosis…
Una enfermedad incurable que causa espasmos musculares dolorosos acaba de recibir $ 45,000 más cerca de una cura. La distonía es una condición incómoda que hace que los músculos se…
Es una especie de una insignia de honor cuando una enfermedad rara consigue tiempo de emisión en un programa de televisión a nivel internacional querida. Y tal vez los médicos…
Happy Post-USA Election Day Friends! TGIF Patient Worthians, am I right?! Hopefully this weekend is full of rest, relaxation and positivity! Maybe just avoid social media for a while and hang…
The human body is a magnificent creation. Everything works together as one big “machine.” However, from time to time for some unknown reasons we may develop a glitch that alters…
You couldn't breathe, you had swollen lymph nodes and a cough that would not go away. You go to the doctor and had some test done. You are told you have…
I don’t know what it is about hereditary angioedema (HAE) that makes people with it have a really great sense of humor, but they do. Maybe it’s the absurdity of…
Any of you ever think about running a marathon? I know I have. I've thought about it. Have I run a marathon? NOPE! Sure haven't. That sh*t looks hard. Look,…
Parents and guardians of a child with chronic illness have it very hard, much harder than most people understand. Listening and reading your stories, I have come to understand that…
Multiple. System. Atrophy. Even if you know nothing about MSA, stringing those three words together doesn't sound promising. MSA is a neurodegenerative disorder that's characterized by autonomic nervous system failure.…
Ok, es el momento para un experimento. Coge un grupo aleatorio de gente de la calle y pegarlos en una habitación (asegúrese de preguntar en primer lugar, por favor). Pídales…
For so many people, hearing the word "normal" come out of a doctor's mouth can be comforting. But for Chloe Christos, now 27 and diagnosed with von Willebrand disease (vWD), this…
Australian scientists have developed a new blood test that has potential to identify Parkinson’s disease (PD) (early) in people, which is enabling doctors to better treat their patients who have…
It was a match made in heaven when the Homecoming King fell in love with the Homecoming Queen. Several years after they accepted their crowns, they got married and planned…
Have you been looking for a resource on Ehlers-Danlos syndrome (EDS)? If so, you'll know that it's difficult because EDS is a rare inherited condition, and there aren’t many credible resources to…
Exercising with CRPS can be beyond difficult, but I’m sure everyone from your doctor to your mother has encouraged you to do it. Why? CRPS already causes you pain, and…
Miracles never cease to amaze me. And quite frankly, it’s been a long time since I’ve been convinced that one actually has happened—although in theory, I welcome miracles every day!…
When you think of the Mediterranean, you probably picture sun-kissed white sand beaches, azure blue waters, and the exotic coastlines of Italy, Greece, and Morocco. What you probably don’t picture…
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.
