ARFGEF-1: Neurodevelopmental Spectrum DisorderI grew up feeling different. I was told I never felt pain, yet I seemed to know when I was hurt. The grown-ups thought I was lying when I said...reactions5comments
The Career DebacleManaging a career with a rare disease can be challenging, especially if you have just learned about the condition, like my ultra-rare Gillespie syndrome. Though I wouldn’t quite call it...reactionscomments
Ignored SymptomsI became sick and was treated by doctors who only diagnosed patients by what the books say! They did not listen to me and my symptoms! I suffered for years...reactions1comment
Sajjona: Trisomy 18 ThriverSajjona was born on October 3,2017. She weighed 3lbs 9 oz and was 15 3/4 in long. Shortly after birth she was diagnosed with Trisomy 18, also known as Edwards...reactions2comments
Surrounded by WaterSince I was born I've been ill. At 5 years old I had bladder, stomach, and bowel problems. I had bladder tests operations for the pain in my stomach, but...reactions3comments
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...reactions2comments
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...reactions7comments
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...reactions2comments
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...reactions1comment
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...reactions1comment
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...reactions2comments
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...reactions1comment
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...reactions1comment
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...reactions1comment
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...reactions2comments
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...reactions2comments
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...reactions1comment
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...reactions2comments
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...reactions1comment
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...reactions3comments
