Tell your story!

Share your photos, videos and your experiences!

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.
Sindrome de Poland (Spanish)

Sindrome de Poland (Spanish)

Tamara, Spain, February 17, 2014

Yo nací con síndrome de Poland por lo que se y he ido descubriendo a lo largo del tiempo es una enfermedad que no es hereditaria, y que tiene diferentes patologías dependiendo la persona, tiene un tra...

behcets disease

behcets disease

michael, United Kingdom, February 17, 2014

I first realised my health was out of the norm when I presented a red eye with mouth ulcers to the family GP while at senior school in 1982 who sent me that day to the local hospital eye unit. Several...

How do we cope with Rare Disease - CADASIL

How do we cope with Rare Disease - CADASIL

Billie, United States, February 17, 2014

Thank you in advance for reading this. Hi, I am known as Billie all over the world who deals with CADASIL. CADASIL is a rare genetic disease. I am very persistent person and would not stop researching...

Aggressive Fibromatosis

Aggressive Fibromatosis

Caitie, United States, February 16, 2014

I have aggressive Fibromatosis or Desmoid tumors. My left arm is riddled with tumors. I've had 14 surgeries, IV and oral chemotherapy, radiation all to keep from losing my arm entirely. Without organi...

Misophonia

Misophonia

Parents of Children with Misophonia 4S Support Group, United States, February 16, 2014

Outwardly our children seem to be a typical bunch of kids but they have a hidden disease that causes them pain and distress and robs them of a normal life. Misophonia (also known as Selective Sound S...

Ragdoll Illness - Myasthenia Gravis

Ragdoll Illness - Myasthenia Gravis

Denise, United Kingdom, February 14, 2014

I was diagnosed with Myasthenia Gravis 27 years ago. It all started as I just left school when my left eye started to droop, then over time my arms, legs felt heavy and had trouble lifting them. I wen...

An unplanned journey

An unplanned journey

Alison Sollars, Australia, February 14, 2014

My beautiful nephews, Matthew and Timothy have Niemanns Pick Type C. They are the most inspirational young men and despite their condition, always have a smile on their faces. They are my inspiration....

A Fitsurvivor

A Fitsurvivor

Lisa, United States, February 13, 2014

As a breast cancer survivor with a bleeding disorder, I know all too well how difficult a health challenge can be! I almost didn’t survive a routine tonsillectomy during my college years due to massiv...

Sindrome de Devic

Sindrome de Devic

DENISE, Brazil, February 13, 2014

Olá, meu nome é Denise tenho 28 anos e há um ano descobri que tenho sindrome de Devic. Esta é uma doença inflamatória autoimune na qual o próprio sistema imunitário ataca os nervos ópticos e a espinal...

ehlers danlos syndrome+autoimmune

ehlers danlos syndrome+autoimmune

chloe, United Kingdom, February 12, 2014

i am 14 years old and i have ehlers danlos syndrome they are unsure what type i have because i have so many symptoms they also think i may have an autoimmune disorder. ehlers danlos syndrome is a conn...

MSK-what a pain!!

MSK-what a pain!!

Diane, United States, February 12, 2014

Hi there, my name is Diane and I suffer from Medullary Sponge Kidney Disease. Both of my kidneys are like sponges and basically produce kidney stones on a daily basis. Some say it's a Congenital Abnor...

Team Super Joey Fights Histio

Team Super Joey Fights Histio

Gina, United States, February 11, 2014

In April of 2012, my son had been complaining for a few weeks about pain in his leg. It first appeared as a pulled muscle in his thigh but it kept getting worse and seemed to be spreading. I took him ...

Discapacitados Otros Ciegos de España

Discapacitados Otros Ciegos de España

D.O.C.E, Spain, February 11, 2014

Here we are. We see less; only that. We are visually impaired, not blind, but we need help. This is the story of D.O.C.E (Visually Impaired, other blind people in Spain). We are Stargardt patients, Re...

Mattia is conquering the world

Mattia is conquering the world

Bartolomeo, Italy, February 10, 2014

With a rare disease to be able to stand and walk is a great achievement. Go, and never stop! video sent: http://www.youtube.com/watch?v=Djj7kwCQQR0

Matthews Journey - Late Infantile Battens Disease

Matthews Journey - Late Infantile Battens Disease

Mel, United Kingdom, February 10, 2014

Matthews Journey with Late Infantile Battens Disease Im going to tell you a little about my journey and Battens disease. A little about my darling Matthew and my family. Matthew is our ...

Internal Strangulation

Internal Strangulation

cindy, United States, February 10, 2014

At 38 years old I found I was having difficulty breathing. I thought it may be some new allergy and I was hoping it would just get better. It only got worse. I tried to ignore it and went for a well c...

My story

My story

Marina, Canada, February 10, 2014

Trigeminal neuralgia , I couldn't even say the word ,let alone know what it meant. That was me a few yrs ago. So off I went to do my research. First thing that pops up *sucidie disease* omg! I'm going...

MAS & FD

MAS & FD

Vivian, Greece, February 10, 2014

First of all, i would like to apologise for my bad english. I am from Greece and i was born with McCune Albright syndrome but the doctors here had no idea about it. I was three year old when i started...

Ethan's Story

Ethan's Story

Mauri, United States, February 10, 2014

Hello, my name is Ethan Wayne Randolph, I would like to share with you a little about myself and the important quest I have joined to fight a rare disorder. Schizencephaly is an extremely serious diso...

Olivia's Story

Olivia's Story

Emma, United Kingdom, February 10, 2014

Living with argininosuccinic aciduria Olivia was born with a rare urea cycle disorder, which was poisoning her body. A fast diagnosis and treatment at Great Ormond Street Hospital saved her life. Mum...

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