Gaucher disease occurs when the body doesn't produce the enzyme beta-glucocerebrosidase, which is needed to break down fats, or lipids. As a result, fatty deposits collect in the spleen and liver,…
When you get a diagnosis of a rare disease, like Ehler-Danlos Syndrome (EDS), trying to learn about it can be overwhelming. Where do you even start? Do you just start…
If you or someone you love has been diagnosed with cystinosis, chances are you want to do everything you can to learn about it. But the internet can be a…
There is good news for the Castleman disease community: a new drug called SYLVANT (siltuximab) has recently been approved for use by the Food and Drug Administration. If you aren't…
Aplastic anemia is the result of the body's bone marrow not producing enough healthy red cells. This can occur because the bone marrow has been damaged by toxic chemicals, radiation, or…
El martes 15 de septiembre varios miembros del equipo digno de pacientes asistían al Taller Científico Anual de las Enfermedades Raras organizado por la Fundación EveryLife de Enfermedades Raras. El…
Have you found a comprehensive resource for living with myasthenia gravis (MG)? This is the website you need. From the first click, the Myasthenia Gravis Foundation of America (MGFA) webpage…
"Fate whispers to the Warrior, 'You are not strong enough to withstand the storm.' The Warrior whispers back, 'I am the storm.'" World Rare Disease Day is observed each year…
Playing games with your mind? That's exactly what experts believe you should do to stimulate your brain and stay sharp, no matter how old you are. You might be surprised…
Popular New Zealand news anchor Toni Street announced to fans she has Churg-Strauss syndrome. Toni didn't want to kick up a fuss about her diagnosis with the autoimmune disease. Her viewership…
People mostly know that cystic fibrosis (CF) causes issues with the lungs—to the point of breathing difficulty. Contrary to common assumptions, cystic fibrosis also affects the pancreas, making it difficult…
A friend of mine has a disease that at one time carried the name of a Nazi doctor (it was only changed about 2-3 years ago!). So I suppose “Schnitzler…
“In the pipeline” are words that make the heartstrings of anyone living with a chronic, hard-to-treat disease go twanggggg. It’s Big Pharma lingo for “drugs under development,” and generally signals…
Press release: 12th October 2016 Abigail Brundrett, 16 and Cassidy Vancil, 18 from Charlotte, NC, have choreographed and performed a dance video [to help her lifelong friends]. [It] highlights the struggle faced by people…
Sometimes a video speaks VOLUMES more than mere words. Maybe that’s why Kaleigh McCormick decided to make a video about her life with Ehlers-Danlos syndrome (EDS). Maybe she made the…
It seems like every day I read about another death caused by opioid addiction. When the US government attempted to stem the tide of opioid abuse by restricting medical professionals' ability…
Sarcoidosis is one of the rare diseases that makes me angry. A good friend of mine has it and it has rendered a once vibrant, active woman into one who…
ATTENTION all of you go-getters and Sherlock Holmes peeps! I’m calling on my investigative peeps for some support! Here’s a challenge for ya to help the Cushing’s disease (and Cushing’s…
Everyone wants to know the secret to living longer. The Fountain of Youth. The Elixir of Life. The Philosopher's Stone. Well, researchers may have found the answer and they have…
For me, a good book has the ability to transport me to another place. I often find myself escaping within the pages to another world created by the author. Through…
You may or may not know that Cushing’s disease can be challenging to diagnose because no two cases are exactly the same. People can experience symptoms or even a combination…
Celia Godfrey is awesome; there's just no debate about it. I wish I had her positive attitude. The seven-year-old lives with dystonia, a neurological condition that affects communication between the…
Call me crazy, but I’m pretty sure September was trying to kill me. The whirlwind romance with summer is over. All the front displays of the supercenters showcase the brilliantly…
You're doing everything right for your newborn baby, including having a heel stick so your child can be tested for a host of genetic abnormalities. Life is good. Weeks later,…
Sabemos que la sobre exposición al sol provoca una situación grave quemadura o sus cortezas, pero ¿sabía usted que el sol puede ser especialmente peligroso para las personas con una…
© 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.
