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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.
mi hija es un milagro

mi hija es un milagro

nevenka, Chile, March 14, 2015

Nuestra historia comenzo el dia 5 de agosto, dia en que nos dicen los medicos que florencia nuestra pequeña hija de tan solo 45 dias estaba sufriendo de insuficiencia cardiaca debido a que tenia un pr...

Together we can do anything!

Together we can do anything!

Visegan, Romania, March 11, 2015

Hi! My name is Cosmin, i`m 21, i am from Romania and i have SMA from the age of 2, i dont know how is to walk, but i`m thinking about this everyday... now i`m studying law and i`m proud of me. I hope ...

IdiopathicParafoveal Telangiectasia

IdiopathicParafoveal Telangiectasia

PATRICIA, United States, March 2, 2015

My name is Patricia , I'm from Carmichaels ,Pa. The United States In January 2014 I started having problems with my right eye. At first I thought it was because of not going to the eye doctors like I...

Dermatographic New Yorker

Dermatographic New Yorker

Daisy, United States, March 2, 2015

Hello, my name is Daisy Juarez and I'm a patient of Dermatographia. Two and a half years ago, I would get a simple scratch on my arm from the simplest of objects like a notebook or a table corner and ...

An unstoppable student

An unstoppable student

Jessica, United States, March 1, 2015

My name is Jessica. I am a full time Anthropology student at the University of Alaska Fairbanks. I have dreams of a masters and a PhD in the future. I also act (currently play the wicked stepmother in...

My Mother's SJS/TEN Survival

My Mother's SJS/TEN Survival

Linda, United States, March 1, 2015

Hello, my name is Linda VonTress and my mother, Vivian L. Dance, had survived the life threatening disease known as Stevens-Johnson syndrome/Toxic Epidermal Necrosis. This disease is caused from an ex...

Crime fighting Toby

Crime fighting Toby

Lauren, United States, March 1, 2015

I'm writing in support of Tobias Rex, one of my 4 year old Preschool students who has convinced himself and everyone around him that he is the real Batman. Toby might have been diagnosed with a rare f...

Living with mastocytosis

Living with mastocytosis

Cathy, United States, March 1, 2015

Recently my dermatologist diagnosed me with mastocytosis. Mastocytosis is a disease in which your body produces too many mast cells so that you are constantly in an allergic state. In severe cases, th...

Fight to be heard & don't give up!

Fight to be heard & don't give up!

Lucienne, United Kingdom, March 1, 2015

My advice to anyone who reads my story, is to always be your own health advocate. Never take a Doctors word for something if it doesn’t add up to you, or you continue to feel unwell. We are the ones...

Long road

Long road

Clare, United Kingdom, February 28, 2015

When I was 17 some appeared on my leg, I went to see a dermatologist and he told me they where glomus tumours and we left it at that. Then in my early 20s my periods were horrendous and my tummy was l...

my son, the love of my life x

my son, the love of my life x

Margaret, United Kingdom, February 28, 2015

My son passed away October 2013, he took unwell on the 13th October 2013 and 3 weeks later we lost him. The hospital didn't know what was wrong with him, 5 weeks after my son passed away we got told t...

Bing Neel Syndrome

Bing Neel Syndrome

Scott, United States, February 28, 2015

I am blessed to live in Seattle, Washington- one of the best places to have an extremely rare cancer! Great doctors and great medical centers! This diagnosis may, however, require a worldwide search f...

Oklahoma City man with rare disease raises awareness

Oklahoma City man with rare disease raises awareness

Guy, United States, February 28, 2015

Guy Leach, of Oklahoma City, has been diagnosed with complex regional pain syndrome. A sprained ankle should not be a serious injury. But for Guy Leach, a technical sergeant at Tinker Air Force Base, ...

Living with Idiopathic Pulmonary Fibrosis

Living with Idiopathic Pulmonary Fibrosis

Diane, United States, February 28, 2015

My name is Diane Reichert and I live with Idiopathic Pulmonary Fibrosis, also known as IPF. What is IPF you may ask? In simplest terms Pulmonary Fibrosis means scarring (fibrosis) of the lungs (pulmon...

Karley's Chiari Journey

Karley's Chiari Journey

KRISTA, Canada, February 28, 2015

I will never forget the day our daughter was diagnosed with Chiari Malformation - July 3, 2013. We had never heard of it - and our pediatrician had only ever heard of it, she had no experience with it...

vivre avec la para myotonie

vivre avec la para myotonie

petillon, Belgium, February 28, 2015

je m'appelle franck petillon agée de 28ans et j'ai ete diagnostique avec une maladie d'eulenburg depuis avril 2014 et je suis en traitement actuelement avec du diamox 250 mg 3 fois part jours

Renpenning

Renpenning

Trish, United States, February 28, 2015

Renpenning syndrome is a rare disorder; its prevalence is unknown. More than 60 affected individuals in at least 15 families have been identified.Renpenning syndrome is a disorder that almost exclusiv...

my FOSMN

my FOSMN

michael, United States, February 28, 2015

yep i have been to four neurologist and in the end after lots of tests (whoa lots of tests) they came up with ..facial onset sensory moter neuronopathy (FOSMN}.no cure..very few studies..according to ...

Only baby in U.S. With this disease

Only baby in U.S. With this disease

Kristi, United States, February 28, 2015

At 5 months pregnant we found out our baby boy wasn't moving his arms and legs, we then began seeing a ton of specialist to get answers , his heartbeat then began to drop at 33 weeks we had a c sectio...

A Little Twist on the Ice Bucket Challenge

A Little Twist on the Ice Bucket Challenge

Macy, United States, February 28, 2015

I was nominated by my mom to do the ice bucket challenge. Not for ALS (a great cause!) but for two disorders than personally affect our family. The ice bucket challenge has gathered so much wonderful ...

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