Hello. My name is Stephanie Lewis. I am 48 years old and have been ill over half my life. I have been diagnosed with Asthma, CFS, IBS/C, Interstitial cystitis, dysautonomia,…
Society teaches us to make comparisons all of the time. When you chose to participate in a competitive game, and you want there to be a winner and a loser,…
While I write about rare and neglected disorders all the time, very few people in my life actually know about my own experience. I have hypermobile Ehlers-Danlos syndrome (EDS), a…
My name is Jasmine Taylor and I am 12 years old. October is one of my favorite months (July is the other one- it’s my birthday month!)… Let me tell…
This is the second part of Amber's story. Check out part one here. June rolled around, and my appointment with the rheumatologist came up. The hour-long car ride there made…
Hello all! My name is Amber Aerni. I am 28 years old, and I would like to tell you the story of my POTS journey. Yes, I refer to my…
I remember being 16 years old and commencing my first drug to help manage my heart rate and endless dizziness. It was strange, because I recall asking my friends if…
This is a video presentation I created called Living Well with Dystonia. It shares some of the many things I have learned in my almost 20 years of living with…
If you have a health condition where you are misunderstood and perhaps judged by others for how you live your life to battle your symptoms, I invite you to read…
My name is Lauren. I’m 24 years old and I’m an ICU nurse from Texas. Last May, I was diagnosed with postural orthostatic tachycardia syndrome (POTS) and inappropriate sinus tachycardia (IST).…
Just days after my CVID diagnosis, I was invited to a support dinner. It was at this support dinner that I became aware of how unique my situation was; I…
My name is Lindsay Fogarty. I am a 25-year-old single mother to a wonderful 6, almost 7-year-old son, named Andrew. As I am writing this I am listening to the…
Many persons living with rare disease require a transplant of certain organs. Though this is not a cure for the rare disease Cystinosis, a kidney transplant is often required once the disease…
I have Gaucher disease. I often wonder what it would be like to not have this disease. But then I stop and redirect my thoughts. I’ve spent too much time in the…
Attitude as defined in the dictionary: “A settled way of thinking or feeling about someone or something, typically one that is reflected in a person’s behavior.” In my opinion, how…
Happy Friday! As the week comes to a close, we want to spotlight four articles. We have advice from a patient with CVID who learned how to manage her condition…
Three large black and white beasts rest under a shade tree to avoid the sun’s hot rays. They appear to be chewing gum, although they are really chewing their cud.…
Happy Friday! While the weather this week has been tumultuous, treatment news offers hope to the rare community. This week, we have an announcement about a Scleroderma registry, and PKU…
I’m writing this article now because it was something that I needed one year ago and didn’t have. I didn’t know anyone who had moved abroad with Common Variable Immunodeficiency…
I know that it's been months since Kylie Jenner tweeted that Snapchat was over, and the company stock dropped like a billion dollars over night, but if you, like me,…
Happy Friday Everyone! As we get ready for the weekend, we want to spotlight four articles. We have an article about a man with Parkinson's who uses social media to…
Despite my misfortune, I still live life to the fullest I can. At three years of age, I was diagnosed with a rare disease, which initially had little impact on…
Happy Last Day of August! As we get ready for the autumn, we want to highlight four articles. We have an article about the Zebra Ball fundraising for EDS advocacy,…
Happy Last Day of August! As we get ready for the autumn, we want to highlight four articles. We have an article about the Zebra Ball fundraising for EDS advocacy,…
On August 4th, the Ehlers-Danlos Society led the Zebra Strong Rally, which concluded the third day of the Ehlers-Danlos Syndrome Learning Conference in Baltimore, Maryland. Advocating for Ehlers-Danlos Syndrome The…
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.
