Crystal, Trigeminal neuralgia, United States, March 5, 2020
My name is Crystal. I’m 23 years old, and was diagnosed with Trigeminal Neuralgia, in May of 2017. That was 4 days after my 21st birthday. I woke up and the right side of my face was numb. Immediately...
Fabi, Tetrasomy 15q26, United States, March 5, 2020
El es mi hijo javier tiene 3 años y con un síndrome que no es tan común quisiera en algún momento encontrar una familia con el cual poder aprender más sobre este síndrome y así poder ayudar más a mi h...
Stacey, Gastroschisis, United Kingdom, March 3, 2020
My son was diagnosed with gastroschisis at 17 weeks and 3 days I had to be induced at 33 weeks my son came at 33+1 the next day. My son had two surgeries when he was born in a span of a week he's now ...
Desiree, AL Amyloidosis, United States, March 3, 2020
Bombshell!!!!! I was in for a shock of my life. I did not see this coming by a long shot. Something that I had no control over. A life changing moment. Sitting in the doctor’s office, waiting for the ...
Agnes, PNH, United States, March 3, 2020
I was diagnosed with severe aplastic anemia in 2004 . Prior to that I was feeling tired all the time and couldn't keep my eyes opened. I thought I was iron deprived but that wasn't the case. Than...
Mary, Peroxisomal disease (zellweger syndrome), United States, March 2, 2020
I am the great, great aunt of a beautiful girl named Ainsley, who has Zellweger syndrome, a peroxisomal disease. I hate that there is no cure for her disease. She has so many health issues and she kee...
Victoria, Reflex Sympathetic Dystrophy, United States, March 1, 2020
In 2008 I was beginning my Junior year of high school, when on November 1st, while moving my great grandmother into a new apartment my world as I knew it crumbled around me. I dropped a marble table o...
Diane, Relapsing Polychondritis, United States, March 1, 2020
Each year I "celebrate" Rare Disease Day which was February 29th. Celebrate is a weird word to describe it, but it a day that I remember that I am not alone in this fight with a rare disease. I have...
Maria, GPA, United States, March 1, 2020
After many months with flu like symptoms, antibiotic after antibiotic I was diagnosed with vasculitis more specifically Graulomatosis with Polyangiitis Aka wegeners disease. A 19 year old girl put her...
Bray, SLC1A4, Australia, March 1, 2020
I have a 6 year old grandson with a condition known as SLC1A4 of which there are approximately 20 known cases in the world.Dean who is epilectic with intelligence issues cannot walk,crawl,sit up,talk...
Mara, Psychogenic movement disorders, Hungary, March 1, 2020
"Its all in your head." "Its only psychogenic." "Get over it, its just in your head."Just some phrases I have to deal with nearly every day. I'm 21 and I suffer from Psychogenic-Non-epileptic-seizure-...
Kira, Nuerocardiogenic Syncope, hemiplegic migraines, dysautonomia, undiagnosed connective tissue disease, United States, February 29, 2020
I haven’t been sick my entire life, I was relatively “healthy” until 2018. I suffered from a mini stroke at the age of 21 and my life did a 360°. Instead of battling limbs that needed to be retaught h...
Molly, Undiagnosed Mast Cell Activation Syndrome, Undiagnosed Ehlers Danlos Syndrome type III, Idiopathic Urticaria, Conversion Disorder, United States, February 29, 2020
My name is Molly, and I'm almost 16 years old. I am from New York State and I am living with multiple chronic and rare illnesses. My journey started when I was about 12 years old. I was constantly in ...
Sharon, FSHD, United States, February 29, 2020
I have a rare disease – FacioScapuloHumeral Muscular Dystrophy. One in every approximately 8000 people have FSHD. I had never heard of this disease until I became sick at the age of 28. Neither had my...
Nadine, Niemann-Pick disease type A, South Africa, February 29, 2020
Here we sit thinking that an autism diagnosis was the end of the world. Caitlyn was born on the 20th of May 2012. After a very long 23 hours in labor, we got to see our beautiful baby girl weighing 3....
Brad, Dystonia-plus syndrome, United States, February 29, 2020
I have segmental Dystonia. I was a career firefighter/EMT. It began with rapid eye blinking and involuntary jaw movements. I was diagnosed with Meige Syndrome (a combination of the two affected area...
Irene, Sarcoidosis, Canada, February 29, 2020
I shared this photo on Facebook in early 2017. I was trying to own it. It is the scar I received as a result of the biopsy surgery that confirmed my diagnosis of Sarcoidosis. These days, having a scar...
Alyssa, Ehlers-Danlos syndrome, United States, February 29, 2020
Hi, I am Alyssa and I am 20 years old. I officially received a diagnosis of hEDS when I was 17 years old. I have exhibited symptoms my whole life but doctors could never fit the puzzle pieces together...
Dorothy, Paraneoplastic cerebellar degeneration, United States, February 29, 2020
On behalf of my brave sister Sandy, I want to raise awareness of this horribly disabling syndrome, Paraneoplastic Cerebellar Degeneration. There has been very little research done on this syndrome, wh...
Nelly, Chronic pneumonia, chronic anemia, Lupus, United States, February 29, 2020
I have known Teresa for just shy of 37 years. During the last 13 years I’ve seen her suffer with chronic pneumonia, a disease for which there is no cure to date. The endless hospital stays and the phy...
