It's Just the Way You AreI just turned 60. I have been questioning many things, regarding my health, for as long as I can remember. I went to doctors, or was taken, and never really... By CommunityMember596d932 min readBookmark for laterReactions 0 reactions Comments0 comments
28 YearsIt's been 28 years since I've been going to doctors for help. 28 years since I got congestive heart failure at 32. Kidney stones, kidney failure. Tumors wrapped around my... By Patricia dunnigan6 min readBookmark for laterReactions 0 reactions Comments0 comments
A Rare CHANCE LifeMy story is about my son Chancely, who is a very strong & vibrant young boy! I started noticing he was sick extremely often at about 6 months old. Then... By CommunityMember853b383 min readBookmark for laterReactions 0 reactions Comments0 comments
Self-Care Is The Best CareSimply put self-care means taking time to do things that will protect your well-being and happiness. It’s those things that will pour into you when you feel depleted, boost your... By Tamlittle2 min readBookmark for laterReactions 0 reactions Comments0 comments
The Impact a Rare Cancer Has Had On My LifeBeing diagnosed with cancer 16 years ago changed my life forever. Nothing can prepare your mind, or body to be told you have cancer. A rare one at that with... By Tamlittle3 min readBookmark for laterReactions 0 reactions Comments0 comments
My Wild RideI was diagnosed with myathenias gravis in September of 2022. I presented with shortness of breath while doing water aerobics. Sounds crazy but I am an excellent swimmer. To feel... By Connie4 min readBookmark for laterReactions 0 reactions Comments0 comments
Attack Ataxia: Shundra's JourneyI have three family members that have passed from complications of this hereditary condition. My two oldest sisters and a nephew. Spinocerebellar ataxia is a condition that runs heavily in... By CommunityMemberc83e8b1 min readBookmark for laterReactions 0 reactions Comments0 comments
You're Just ComplicatedHave you ever been told that you are complicated by a medical professional? I have time and time again. My journey started off with migraines back in the 90s. Then... By Gastrowar11 min readBookmark for laterReactions 0 reactions Comments0 comments
When Stubbornness Pays OffI knew from childhood that there was something different in my health from other kids. It seems as if I was born just before various issues were diagnosed and studied... By jleighshank1 min readBookmark for laterReactions 0 reactions Comments0 comments
Medical Mystery Turned Into a Rare Disease WarriorJosiah J is a wild spirited two-year-old who has familial cold autoinflammatory syndrome (FCAS). When I was pregnant with Josiah I developed a lot of complications, but a mother's intuition... By MCabrera31 min readBookmark for laterReactions 0 reactions Comments2 comments
Not Medically FragileMy daughter was born with a rare form of muscular dystrophy called nemaline myopathy. She was three before we knew something was different with her. She was just a little... By missprisswv1 min readBookmark for laterReactions 0 reactions Comments2 comments
My MG JourneyI’ve always fallen down since childhood. Doctors didn’t know what I had. Never had enough strength to play kickball. Until I could. And then I couldn’t. I was smaller than... By MGgal3 min readBookmark for laterReactions 0 reactions Comments0 comments
My Prurigo Nodularis StoryI 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... By CommunityMember1a2dea1 min readBookmark for laterReactions 0 reactions Comments2 comments
Acromegaly: My Ups and DownsThe 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... By tracifhardin4 min readBookmark for laterReactions 0 reactions Comments0 comments
Tired of Doctors Calling Me UnusualI've learned a lot about the medical profession over the years and here in the west, they are trained to look at numbers on tests for everything. If your numbers... By Habberdasher3 min readBookmark for laterReactions 0 reactions Comments3 comments
Amy’s story: Let’s play a little game● Lift up your right arm, and now lift up your left. Lower them again. ● Tip your head up. Look up as high as you can. Move your eyes... By AmyMillardChronicMom2 min readBookmark for laterReactions 0 reactions Comments0 comments
Welcome to RareDisease.net Stories!At RareDisease.net, we believe that we are stronger together than we are alone. Living with or caring for someone with a rare disease can be a challenge, but the more... By Editorial Team 1 min readBookmark for laterReactions 0 reactions Comments0 comments