Xanadu I or Don't I? A Rare Disease Roller Skating Odyssey...In the earliest days of the COVID-19 pandemic, my partner Gwenn and her friends decided to order roller skates and take a...reactions1comment
Hope for Cushing’s Disease...I was diagnosed with Cushing’s disease in ‘98. Textbook case with everything effected. Pituitary resection lead to reoccurrence so I had Gamma...reactions2repliesAwareness
Yoga Doesn't Cure My Autoimmune Diseases..."Oh, you have XYZ disease? Have you tried yoga?" Wow, if I had a nickel for every time someone tossed this cookie-cutter...reactions12comments
New Symptoms, New Fears: The Beginning of My Rare Disease Diagnosis (Part 1)...In July 2015, I had my little boy. He was 8 pounds and 10 ounces of pure perfection. He was my third...reactionscomments
Life With a Rare Disease: How the Little Things Add Up...I wrote about this topic 10 years ago, and while I forgot I had written about it, it's something I've been talking...reactions3comments
How Do You Cope?...Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage...reactions58repliesCoping
Community Views: Navigating the ER as a Rare Disease Warrior...Living with a rare disease creates obstacles to healthcare. Specialist doctors understand rare diseases best. But sometimes, you need emergency care. And...reactions3comments
The 2024 Social Health Awards Program...Editorial Note: Nominations for 2024 are now closed. We are very excited to announce the launch of the 2024 Social Health Awards...reactionscomments
The Power of the Words We Tell Ourselves...I didn't fully realize how much my physical health impacted my mental health until recently. Sure, I know I've struggled with depression...reactions2comments
Finally Diagnosed... Now What?...A rare disease is one that affects less than 200,000 people. Rare conditions are hard to diagnose because not much is known...reactionscomments
SSI and Medicaid: Moving to a Place Based on Healthcare..."What do you mean I'm not eligible for Medicare?" I groan into the phone. "I'm on Social Security, aren't I?" At this...reactionscomments
Active todaySweet Syndrome...Any other folks with Sweet Syndrome that would like to share their experience with getting a diagnosis and treatment?...reactions6repliesDiagnosis
Setting Boundaries: What Self-care Looks Like...While I started my medical journey when I was 8, it has taken nearly 30 years to understand the relationship between setting...reactions3comments
A Journey to My Authentic Self...I have always strived to see the silver linings or the good in every situation. My immune deficiency diagnosis of hyper IgE...reactionscomments
My Prurigo Nodularis Story...I was diagnosed with the above disease last year. It has a prevalence of around 3/10,000. The aetiology is unknown. It causes...reactions3comments
Zebras Can’t Be Tamed: Coexisting With a Rare Disease...Zebras are part of the equine family, but they have never been truly domesticated. While they are kept in zoos, wild animal...reactionscomments
Dusty Terrill...Dusty Terrill is a nature-loving and adventure-seeking travel advisor, rare disease advocate, writer, and research participant at the National Institutes of Health...
My Multidisciplinary Care Team: Why I Love My Hemophilia Treatment Center...I used to hate any type of doctor's appointment. Having been born with hemophilia, many of my earliest trips to the hospital...reactionscomments
Asking for Help and Applying for Disability...Editor's Note: This article was written by Halimat Olaniyan and originally appeared on our partner site Sickle-Cell.com. I’m not very good at...reactionscomments
