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 point, the Social Security agent kindly explained to...Reactions0reactionsComments0 comments
Sweet Syndrome...Any other folks with Sweet Syndrome that would like to share their experience with getting a diagnosis and treatment?...Reactions0reactionsComments0 repliesDiagnosis
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 boundaries and one's well-being. I spent most of...Reactions0reactionsComments0 comments
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 syndrome came from a near-death experience. I was...Reactions0reactionsComments0 comments
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 unbearably itchy papules which dominate life preventing normal...Reactions0reactionsComments2 comments
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 parks, and safaris, they have never let themselves...Reactions0reactionsComments0 comments
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. Dusty was diagnosed with hyper IgE syndrome AKA...
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 resulted from a nosebleed or some type of...Reactions0reactionsComments0 comments
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 asking for help when I’m sick. It’s ironic...Reactions0reactionsComments0 comments
What a Caregiver Means to Me...I talked with an old friend from high school who just found out he has a rare disease about how much our partners and caregivers mean to us. First, we...Reactions0reactionsComments4 comments
Who has GI issues with CMT?...I have severe constipation and gastroparesis with CMT. Does anyone else suffer GI issues?...Reactions0reactionsComments2 repliesDiet & Nutrition
Dealing w more than one...Hi, I'm happy to have run across this email, community forum. I currently suffer with HS & also Hydrocephalus. These are two rare diseases. How did I get both... Guess...Reactions0reactionsComments23 repliesAwarenessCopingDepression
I wish others knew that......What is one thing you wish more people knew about living with a rare disease?...Reactions0reactionsComments44 repliesCoping
Welcome! Let's Get to Know Each Other....We are glad you are here! Please introduce yourself and let us know which rare disease impacts your or your loved one's life....Reactions0reactionsComments69 replies
Children and Rare Diseases: Tips for Navigating Emergency Care...When your child lives with a rare disease, you expect to make regular visits to the doctor for care. But sometimes the unexpected happens, which could mean a trip to...Reactions0reactionsComments0 comments
Annie-Danielle Grenier...I raise awareness, educate and advocate for people living with rare and invisible diseases, having a few myself. I have hypermobile Ehlers-Danlos syndrome, autoimmune polyendocrinopathy (type II) and an unspecified...
Acromegaly: My Ups and Downs...The year my son Tyler entered kindergarten, I started the school year active and involved in Tyler’s classroom. But, by December I didn’t have the energy to make it to...Reactions0reactionsComments1 comments
What to Expect During a Disability Hearing (In America)...My phone buzzed angrily. It was 20 minutes after the hour, and I’d been scrambling about frantically. I was searching for documents from Social Security that might explain what to...Reactions0reactionsComments3 comments
Dwayne Wilson...Dwayne was previously a health leader on RareDisease.net. My name is Dwayne Wilson and I have Late on-set Pompe Disease. Pompe, it's in my DNA, I was diagnosed with the...