For old-timers like me who grew up in the Dark Ages before the internet, it’s still amazing to think that you can access what amounts to the contents of the…
So my endocrinologist calls me and tells me I have acromegaly. First thing is she calls me and tells me I have this disease that I’ve never heard about before.…
According to the Center for Disease Control, there were nearly 35,000 cases of Lyme disease reported in the United States in 2014 (the most recent year on record). While that…
Most of us are familiar with the film The Theory of Everything, which chronicles Stephen Hawking’s affliction with ALS. But there is another film just as compelling: Transfatty Lives by…
Are you ready for the Lyme Disease Challenge? Have fun and do something good at the same time: Challenge your friends and make the funniest face you can muster up! Lyme Disease…
Just weeks after the FDA required more data prior to approving an oral form of Octreotide, proposed by Chiasma Pharmaceuticals, a British pharmaceutical and device company, Glide (not the dental…
Monday, May 16th was HAE Awareness Day. In addition to getting the word about HAE out to the general public and medical communities, every year HAE Day strives to "create an environment…
Have a rare disease? Have you ever been to a national patient conference? These are invaluable opportunities to connect with others who share your challenges and concerns! Imagine being in…
Su americano promedio probablemente piensa en adultos de mediana edad o ancianos cuando escuchan la palabra artritis. Lo triste es que realmente no se les puede culpar. Tome este comercial…
Rare diseases often go undiagnosed because they are, after all, rare. A rare disease isn't usually the first thing anyone thinks of, in light of certain symptoms. It's only when doctors know what…
At 17, she suffered excruciating chest pain, then collapsed. That is when Tess Dunn got the explanation that she had a hole in her heart. Born in the Philippines, Tess was…
A gymnast must be in top form to participate in competitions. As reported by the Amery Free Press, when Elli Meagher began to have problems with muscle weakness, weight gain, and…
Can you and your friends handle the Lyme Disease Challenge? Challenge someone and find out! Take a bite. Share a fact. PASS IT ON! (The funnest part is seeing your…
Global Genes tells us that Bonnie Wheeler spent the first 40 years of her life enduring the symptoms of undiagnosed Ehlers-Danlos syndrome, which is a grouping of connective tissue disorders.…
“ Many describe the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s – simultaneously.” - The Huntington’s Disease Society of America States For almost 50 years research into the cause and…
5 Preguntas que estás cansado de oir cuando tienes ICV: "Así que tienes problema digestivos Y respiratorios? Sí. Ambas cosas. Confía en mí me quedaría con uno si pudiera.…
A mother of three in Scotland had experienced dystonia symptoms since childhood, and these symptoms got progressively worse over the years. Like so many with a rare condition it took…
The HAE community cheered in July of 2015 when another new therapy was approved by the FDA to treat acute HAE attacks. Now, the pharma company has another reason to cheer. The…
The right doctor and the right hospital can make all the difference when your child is diagnosed with a rare (and frankly terrifying) medical condition. That’s what London couple Sukhi…
In the article The Burning Question After a Lyme Diagnosis: What’s Next?, the second part of Alexis Rosen’s story is detailed. A woman whose diagnosis of Lyme disease took eight months.…
Concern versus Worry We teamed up with Patient Worthy Acromegaly Contributor Rob to talk a little bit about two "conditions" that may not be considered "actual" diagnosis' by the medical community.…
This is part 2 of Marian'a journey, click here for Part 1. After some genetic testing, we eliminated the most common, Cruzons Syndrome, so we proceeded with some more testing.…
En la famosa adaptación cinematográfica del musical, Cabaret, Sally Bowles y el maestro de ceremonias realizó las famosas líneas de "El dinero hace girar el mundo." Aunque es obvio en…
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…
© 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.
