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...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...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...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...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...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...reactions3comments
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...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...reactions8replies
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...reactions11repliesSymptoms
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...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...reactions3comments
Urgent Help Needed: Undiagnosed Condition in 8-Month-Old with Severe Symptoms...Hello everyone! I'm posting on behalf of a friend in China whose 8-month-old son has been battling severe, unexplained symptoms since he...reactions2repliesSymptomsDiagnosisTips & Advice
Don't Put Things Off With Rare Disease...Don't get me wrong—I can sometimes be the queen of procrastination. I have my "lazy" moments. But I want people to understand...reactions1comment
APLAID...I’m a patient of the NIH. I don’t believe there is anyone else out there with this disease besides my daughter and...reactions13repliesDiagnosisAwareness
From Reactive to Proactive: Self-Administered Treatment...There's been a big change this year in how I approach my rare disease, hemophilia A. I'm treating myself at home once...reactions5comments
Pola1 gene variation ...Hello, I would like to connect with a family who has a child with POLA 1 gene variation, specifically Van Esch-O'Driscoll Syndrome...reactionsrepliesDiagnosis
my life with Polymyositis...About 7 years ago (I was 77 then) I began noticing body weakness, first, gentle, then more acute. I needed a cushion...reactions7repliesDiagnosis
Bones in head constantly keep feeling like they swelling....For past 12 years I have had the sensation in my head that my skull is swelling.I also have a extremely itchy...reactions2replies
Tips for How to Set Boundaries With Others...More likely than not, if you're reading this, then you've likely experienced someone crossing your boundaries as a chronic illness/rare disease patient...reactions11comments
