Journaling As a Daily Tool for Rare Disease...When I was first diagnosed with narcolepsy, I felt like I was drowning. I floundered in confusion. All of these new symptoms were thrust upon me. I didn't know where...reactions12comments
Burning ear syndrome...I began noticing 1 ear red and not the other rarely both ears, the red ear will get warm...reactions17replies
Is there anybody in the medical field that understands ultra rare duchenne muscular dystrophy of the phenotype sex inherited with skewed markers...I just want to let the world know that there is a cluster family all living females symptomatic with DMD symptomatic as well as the boys only research and studies...reactions1replyCopingResearch & Clinical TrialsAwareness
Grief and Reimagining Advocacy Goals...Life with a rare disease can be unpredictable, and the mental health toll can be significant as we often grapple with loss and grief. Grief doesn't have to be for...reactions3comments
Rare Disease Clinical Trials...Have you explored or participated in a clinical trial? What unique challenges do rare disease patients face when it comes to trials? Let this be a place to ask questions...reactions5repliesResearch & Clinical Trials
Balancing Work and Caregiving: Parenting Kids With Special Needs...Every morning, I wake up with a familiar sense of déjà vu as I feel like I have barely closed my eyes before it's time to wake up and do...reactionscomments
Leg movement...2 years ago I started to develop a disorder in both my legs. Can't move properly. I'm 55 Can't run at all, trip up stairs n more things than I...reactions8repliesDiagnosisTips & AdviceTreatment
How Therapies Treated My Musculoskeletal Injuries from Rare Disease...Due to short bowel syndrome (SBS), I've endured years of malnutrition, and even the years I've been well-nourished, I still have nutrient deficiencies that have significantly impacted my musculoskeletal system...reactions1comment
The Importance of Connecting With Mentors as a Caregiver...Caregivers of individuals living with rare diseases often find themselves navigating uncharted territory. The complicated medical needs, limited treatment options, and lack of awareness about the condition can make the...reactions5comments
Animal Companions...Do you have a pet that has helped you cope with life with a rare disease? Tell us about them and/or share a pic!...reactions27repliesCoping
Horses Helping Rare Diseases: Equine-Assisted Therapies...December 13th celebrates National Day of the Horse in the United States. On this day, people are encouraged to honor the economic, historical, and cultural contributions that horses have made...reactions3comments
My Approach to Taking Medications...In my experience and that of my family, with rare disease comes several additional health conditions. As a result, there is usually a lot of medications to manage. I really...reactions5comments
I CAN'T OPEN MY FINGERS when my wrist is curled up!!! (docs pls help I wanna play guitar pls) ...(my right hand) When I fully extend my wrist, making it bend as far backward as I can, I lose the ability to open my fingers; it feels as though...reactions6replies
How to Manage Fluctuating Symptoms With Rare Disease...Have you noticed that your symptoms fluctuate or change, sometimes unexpectedly, as a person with a rare disease? I have type 1 narcolepsy with cataplexy, and it feels like my...reactions1comment
Staying Informed on Your Rare Disease for Better Advocacy...Ever since I've been diagnosed with the first of my 3 rare diseases, Ehlers-Danlos syndrome (EDS), I've tried to stay informed. It's been important to me because, as with most...reactions3comments
Undiagnosed all season cold sensation of body...I'm 59 and I have a condition for over last 10 years that is now immensely impacting quality of my life. I feel cold getting absorbed throughout my body except...reactions7replies
Goosebumps with most emotions/passion, sneezing, yawning.....Since march of this year, every time I cried, goosebumps all over my left side of my body. Over the last few months it’s escalated, to goosebumps all over my...reactions9repliesSymptoms
New here today, and looking for folks dealing with MDS....Been on different prostate cancer sites with interesting info, but can't find much on myelodysplastic syndromes (MDS) anywhere. Know there is only 10-14K cases a year. Doesn't seem like there...reactions6replies
Who Am I? A Journey About Identity...Not long ago, I had a conversation with my daughter that caught me off guard, though not for the reasons one might expect. We sat together, enjoying a rare moment...reactions3comments
