Happy American Independence Day Weekend Patient Worthy! What happens when you look into the mirror and the person staring back isn't who you were expecting? One word: acromegaly. Do you or…
“She had blue skin, And so did he. He kept it hid And so did she. They searched for blue Their whole life through, Then passed right by- And never…
Lexi New’s Bassett Hound mix Izzy is truly unique, and Lexi credits divine intervention for their meeting. She feels, spiritually, that God wants to help her live life to the fullest. Lexi,…
Anyone thinking of unsolicited advice they've been given, from people who don't understand their illness? 9 times out of 10 chronically ill patients don't want to hear what you think…
In 1924, a maverick young doctor at the Mayo Clinic named Russell Wilder came up with a diet that he thought would help people with epilepsy reduce the number of…
Jana and Sara are 32 year old twins, born and raised in North Dakota. We had the pleasure of speaking with both of these precious young ladies about their rare…
Vanessa Garrett, una mujer con la enfermedad de Crohn, la inmunodeficiencia variable común (ICV), y Leiomiomatosis Hereditaria y cáncer de células renales (HLRCC), esta agradecida por su vida a pesar…
Jessica Gimeno has five diseases, one of those is myasthenia gravis. In her Ted Talk she talks about dealing with those, along with having depression. Go watch! I love that she…
Nicole graduated high school, but was forced to withdraw from college because she suffers from dysautonomia, particularly postural orthostatic tachycardia syndrome (POTS). This disorder causes rapid heartbeat, fainting spells upon standing,…
Doctors in New Delhi, India recently made history by performing a heart bypass surgery on a young boy who has the rare condition called homozygous familial hypercholesterolemia, or HoFH. The…
Have you heard of myasthenia gravis? If not, that's not surprising considering it is a rare disease, with about 20 out of 100,000 known sufferers. However it is probably under-diagnosed and those…
Sixteen-year-old Sydney Rohmann has a number of rare conditions that have left her in a wheelchair. Among them are Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS). She has even had brain…
Q: When is asthma not just asthma? A: When it's a symptom of Churg-Strauss syndrome. Five and a half years ago, in January 2011, Carole Cordum thought that her asthma was…
One way people spread awareness is by wearing shirts and other items with messages about what they support. If you want to be one of those people and you want to…
One of the difficulties facing the IPF community has been a lack of knowledge and awareness about the disease among many doctors and even specialists. An aggressive disease, idiopathic pulmonary…
Zebra’s Child un blogger que tiene inmunodeficiencia variable común, recientemente publicado acerca de la lucha que ella misma hallazgos mirando a la cara a primera hora de la mañana. Mientras se…
Píldoras y Parfaits: ¿Cómo probióticos podrían hacer la vida con CVID un poco más fácil. Entre las infecciones lejos demasiado frecuentes asociados con ICV y los problemas gastrointestinales recurrentes, muchos…
You really have to feel for the poor flu vaccine. Not only is it a target of the inexplicable “anti-vax” movement that would have us believe all vaccines are the…
June is Myasthenia Gravis Awareness Month and Patient Worthy is here to help the cause. We recently published this great article about having a sense of humor when dealing with myasthenia gravis.…
Rachel Ablondi and her husband David knew from the start their infant son Andrew was having trouble meeting common baby-milestones. But their giant wake-up call occurred during a party celebrating…
What do June and snowflakes have in common? June is Myasthenia Gravis Awareness Month, and those afflicted with MG are often called snowflakes because no two people with MG have…
Gaucher, considered a rare, life-threatening disease, affects 1 in every 40,000 to 60,000 individuals, and in most cases, the disease is misdiagnosed, which is just what happened to 18-month-old Tamara…
The future can be overwhelming, and by "the future" i mean sometimes even just next week. Take things day by day and give yourself time to recuperate and refresh before…
I hate the sound of the word “lesion.” I think it ranks right up there with the word “moist” in icky-ness. And I’m willing to guess men with axial spondyloarthritis…
Amanda luchó durante años para comprender el dolor y la hinchazón que se mantuvo experimentar. Sus médicos no podía entender era incorrecto y que nunca supo por qué la garganta…
© 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.
