Puede que estemos acercando a la temporada de vacaciones, pero no hay Ho! ¡Ho! ¡Ho! en HFHo. La mayoría de la gente ni siquiera se puede pronunciarlo, ni mucho menos…
It doesn't matter what other people see, what matters is how tough YOU know you are. Your inner strength has gotten you through a lot and will continue to!
Being a parent is tough. We never know if we’re on the right track. Too many thoughts of self-criticism come to mind: Am I doing this right? Do I practice…
Primary myelofibrosis is one in a group of rare diseases called myeloproliferative neoplasms, or MPNs. It is characterized by an overproduction of one of the three components of blood: red cells,…
I woke up in an emergency room surrounded by nurses, doctors, and tearful friends. I had no idea how I got there or how long I had been there. I…
As if there wasn't enough about Glut1 deficiency to be frustrated with, scientists are now saying there are more symptoms to the condition than they were originally aware of. In…
Life is one wild ride, isn’t it? The greatest surprises of life may be just around the corner. My life was changed by one little red radio flyer wagon. An…
Pediatric ulcerative colitis is an inflammation of the lining of the colon and rectum. The inflammation can wear away the lining, causing ulcers to form, and patients suffer from chronic…
Fields Taylor was 15 weeks old when she had her first seizure. They continued for months as doctors were unable to determine what was wrong. Then another seizure led to more tests…
¿No te odio, haga clic en el cebo? ¡Hago! Mientras que la búsqueda de información real acerca de la Enfermedad de Behcet - porque, lo necesitamos - me encontré con…
Spoonies are strong every day and in spite of a lot. Don't forget that you have a courageous heart <3
In 1964, Henri Hers was studying Pompe disease when he suggested that the absence of lysosomal enzymes could be responsible for several other conditions. He was right, and a category of…
She's young. She's beautiful. And she's living with short bowel syndrome, or SBS. Shante Smith was born with SBS, a disease that renders it difficult for the body to absorb and…
It takes an average of seven years for a patient with a rare disease like severe combined immunodeficiency (SCID) to receive a correct diagnosis; and that comes after the patient…
According to Hershel Raff, Ph.D, a professor of medicine at the Medical College of Wisconsin, Cushing syndrome is one of the most difficult diseases to diagnose. Raff maintains that by using a…
If you have acromegaly, you know that available treatment options are very limited, so when Chiasma, a pharmaceutical company based in Waltham, Massachusetts, received notification that the FDA was not…
If you are trying to dive into aplastic anemia, here are some interesting facts from the Seattle Children’s Hospital that you should definitely check out. First, for anyone who’s been…
Those of us with Gaucher disease who know how much uncertainty, fear, and anger enzyme replacement treatment (ERT) shortages cause, REJOICE! Researchers have found that the oral substrate reduction therapy…
Usted no va a venir a través de demasiadas personas en sus vidas como Elaine Gómez y su hija, Michelle DeMont. Y es probable que no se encontrará con el…
Could the study of Alzheimer's disease lead to treatments for GLUT1 deficiency syndrome? It's been known for a while that there's a link between Alzheimer's and how the brain metabolizes…
Recently, a friend shared her concern for a colleague whose child is suffering from a rare disease called Muckle Wells Syndrome (MWS), a form of Cryopyrin-associated-periodic-syndrome (CAPS). The story prompted…
If you're living with thrombocytopenia (that is, a severely low level of platelets in your blood), then Dr. Mei X. Wu may be your new best friend. The associate professor…
Amidst the hype leading up to the first head-to-head American Presidential debate with Trump vs. Clinton, the topic of Venezuela’s drug shortage of aplastic anemia drugs wasn't mentioned. But having…
Are you a guy who'd rather suck lemons than talk about your Sjogren's syndrome? Men who are living with Sjogren’s syndrome are sometimes forgotten because the disease mostly affects women…
Describing your acromegaly isn’t easy. I’m sure you’ve been met with enough blank stares or uncomfortable jokes about “giants” to last a lifetime. Fact is, sometimes people will not get…
© 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.
