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Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.
Rare Disease Almost Takes Young Mom's Life

Rare Disease Almost Takes Young Mom's Life

Lisa, United States, February 28, 2015

HypoGal, My Story Most of my life I have never considered what the words, “chronically ill” meant. I had related the words,” chronically ill” to someone dying or being paralyzed. I naively had take...

Stiff Person Syndrome (Stiff Man Disease)

Stiff Person Syndrome (Stiff Man Disease)

Jeff, United States, February 28, 2015

My first symptoms came back in August 2012, where I starting having muscle activity such as small spasms and fasiculations (muscle twitches). Soon, I was walking like a toy soldier with stiffness. I s...

my rare disease

my rare disease

Ambur, United States, February 28, 2015

hello my name is Ambur an I have polymyositis with interstitial lung disease I was diagnosed In 2010 but I started getting sick in 2008 I had no clue what was going on I couldn't walk up stairs brush ...

Sian's Battle with Sturge Weber Syndrome

Sian's Battle with Sturge Weber Syndrome

Litz, United Kingdom, February 28, 2015

My daughter Sian was born on April 7th, 1984 with a port wine birth mark on her face and across the top centre of her head. As far as we knew that was all there was to it, 12 years later when she suff...

Laurents battle to be heard

Laurents battle to be heard

miranda, France, February 28, 2015

Laurent has health problems from his birth of. Till he was 5 years old nobody believed him or us the parents. Then they told us that he has a neuromuscular disease and probebly Congenitale Myasthenie ...

Living with PVNS`

Living with PVNS`

Erin, United States, February 28, 2015

Back in 2010 I was out in Lake Tahoe, California visiting my family and we went Skiing. While skiing, I fell and afterwards my knee was hurting badly. When we got back to my aunt and uncles house, my ...

Aah Shut! Here I go again!!

Aah Shut! Here I go again!!

Lynne, New Zealand, February 28, 2015

i've always been driven by positive stress. It has given me the drive to work my butt off in education, in supporting husband's businesses, in parenting. Before I stopped teaching Secondary school, I'...

Her strength, my inspiration.

Her strength, my inspiration.

Yvette, United States, February 28, 2015

When I was 5 years old, my mother was diagnosed with a rare form of Muscular Dystrophy, Dermatomyositis. It affects roughly 5 out 1 million people. Her disease hit hard and caused her to be bedridd...

CGD Diagnosed Too Late

CGD Diagnosed Too Late

Kaci, United States, February 27, 2015

On October 10, 2010 in Phoenix, AZ we had a baby boy we named Joshua. He was healthy and full term but he swallowed miconeum right before he was born so they took him to a small nursery to monitor him...

Finally finding an answer

Finally finding an answer

Dawn, United States, February 27, 2015

I'm a 45 year old woman from Derry, NH and I have Moersch-Woltman Syndrome also known as Stiff Person Syndrome (SPS). I was diagnosed in Nov 2014 and it's basically an autoimmune disease where you bod...

A Worthy Battle

A Worthy Battle

Amanda, United States, February 27, 2015

In August 2013, I was diagnosed with Eosinophilic Esophagitis, a rare digestive disorder which affects the esophagus. Along with this disease, I was slapped with food allergies to gluten, dairy, eggs,...

Iñaki and his fight against the monster Sanfilippo

Iñaki and his fight against the monster Sanfilippo

Janette, Mexico, February 27, 2015

Our story and fight since that terrible diagnosis. After several years trying to get pregnant, finally I did, in 2010... 'It will be a very strong boy' the doctor said. And he arrived with those big ...

Living With EB

Living With EB

Victoria, United States, February 27, 2015

I always wanted to tell my story but I've always been afraid of talking about my condition because of the fear of what people would think. But I thought if there are people out there and that are wors...

Living a full life with myasthenia gravis

Living a full life with myasthenia gravis

Laurna, United Kingdom, February 27, 2015

I was diagnosed with myasthenia gravis a year and a half ago - at the tender age of 26. The first six months were incredible difficult as I not only had to learn all about an illness I'd never heard o...

oh now IC it...

oh now IC it...

Jayde, United Kingdom, February 26, 2015

From being a young kid, i always knew i was weird. I always seemed to be sick, and my parents were beside themselves. Urinary tract infections became second nature to me. Feeling like i needed to pee ...

diagnosis. not normal.

diagnosis. not normal.

Heart, United States, February 26, 2015

duh! - of course I'm not normal. And ya know what, I am ok with that! As a child, I didn't know I was different until a classmate pointed it out to me. When I started kindergarten a kid in my cl...

metastatic fibrosarcoma and desmoid tumors

metastatic fibrosarcoma and desmoid tumors

Lynne, United States, February 26, 2015

It started in 1981, when I was fourteen. I went to the orthodontist and he placed four spacers on my molars. They dug deeply into my cheek. One wound developed a hard ring of tissue around it. That wa...

If Only it Were a Nightmare

If Only it Were a Nightmare

Kristi, United States, February 26, 2015

" Sometimes I see 2 of Daddy ", Maggie said at the age of 9. 3 days later we were told she had 6-12 mths. to live. This after undergoing 3 years of fertility treatments just to have a child. She was a...

Desmoid tumor

Desmoid tumor

Molly, United States, February 26, 2015

I was diagnosed with Desmoid in 2012, a rare fibrous tumor. It is inoperable as per experts. Started on oral chemo for an year with couple of meds. The tumor kept growing and I almost lost the functio...

searching for a match

searching for a match

Theresa, United States, February 26, 2015

my daughter Clara destiny was diagnosed at the age of eight with a rare chromosome disorder 18p12q. I had no idea she had one until her neurologist noticed large cafe Aulaits on her body. I thought sh...

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