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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.
sydrome de williams

sydrome de williams

mokhtari, France, March 27, 2014

Meriem est atteinte du syndrome de williams mon combat contre la maladie se déroule tranquillement sans aucune complication physique je l'ai toujours stimulé afin qu'elle progresse le mieux possible e...

Drowning On land: Living With Interstitial Lung Disease

Drowning On land: Living With Interstitial Lung Disease

Paul, United States, March 7, 2014

Hi, I'm Paul Brighton from Litchfield CT. In April of 2013, I fell Ill with pneumonia. It took four moths and a lung biopsy to discover I had (non-smoker) Interstitial lung disease, a rare disease tha...

living with hydrocephalus schizencephaly and epilepsy

living with hydrocephalus schizencephaly and epilepsy

claire, United Kingdom, March 5, 2014

Hi my name is claire I have a daughter who is 3 yrs old she has hydrocephalus schizencephaly and epilepsy I have known she had problems from pregnancy n throughout the odds she battled through it and ...

all about me

all about me

abigail, United Kingdom, March 5, 2014

my name is Abigail and i was diagnosed with chromosome 12 deletion and has learning disabilities. She has Perthes disease in her left hip - her leg length discrepancy is 5cm and contracture 5th finger...

Inflammatory Breast Cancer

Inflammatory Breast Cancer

Shelley, United Kingdom, March 1, 2014

Inflammatory breast cancer is a rare form of cancer and accounts for around 2% of all breast cancers. It is often missed because the symptoms can be attributed to infections or insect bites and valuab...

Denervation Atrophy of the Muscles

Denervation Atrophy of the Muscles

Paula, United States, March 1, 2014

I have recently been diagnosed with Denervation Atrophy of the muscles. I have had this condition since I was born, 53 years ago. I have been treated for something, unknown, for the past 40 years. Fin...

i almost blind

i almost blind

ALINA, Malaysia, March 1, 2014

I was diagnosed to have Vogt-koyanagi-harada syndrome in sept 2007,a rare disease that I never heard before even though I am a medical officer myself. It attacks the pigment anywhere in the body,esp i...

Meu filho meu Herói

Meu filho meu Herói

Paula, Portugal, February 28, 2014

Olá, sou a Paula sou mãe de 3 filhos, o meu primeiro filho é o Rui Pedro que neste momento tem 18 anos, a seguir veio a Rita que está com 14 anos e por fim a Maria agora com 5 anos. É do Rui Pedro qu...

The Challenges of Chloe Temtchine

The Challenges of Chloe Temtchine

Marvin, United States, February 28, 2014

In February of 2013, singer Chloe Temtchine was completing her album, No Pressure -- produced by Grammy nominee, Greg Camp -- and preparing the international promotional tour. Then one day she was rus...

A wheeze that wouldn't ease: Idiopathic Subglottic Stenosis

A wheeze that wouldn't ease: Idiopathic Subglottic Stenosis

Catherine, Australia, February 28, 2014

My story begins on the Queen’s Birthday weekend, June 2003. I had been married 10 months and being an active couple we were enjoying a long weekend away camping near Wiseman’s Ferry NSW. We enjoy hiki...

Pseumomyxoma peritonei/appendix cancer

Pseumomyxoma peritonei/appendix cancer

Renee, United States, February 28, 2014

Sean Ferrer Hepburn, Audrey Hepburn's son, is today's Rare Disease Day Ambassador. When his mother Audrey was diagnosed with adenocarcinoma treatment options were limited, but thankfully this has sinc...

This Isn't Funny Anymore - Climbing Trigeminal

This Isn't Funny Anymore - Climbing Trigeminal

Daniel, United States, February 28, 2014

Dear Friends, I have had marvelous and caring healthcare professionals while Climbing Trigeminal. Born Daniel Robert, I am Bob Snodgrass, or "Snodgrass Trigeminal" in a search. A bite of a sandw...

Removed a tick 7/29/2003

Removed a tick 7/29/2003

Nicholas, United States, February 28, 2014

I found a tick above my right ankle on 7/29/2003, developed small red spot that gradually enlarged from the size of a dime to that of a quarter. Then, the following week, the center faded, leaving a p...

Lucky to be working at a Medical Center

Lucky to be working at a Medical Center

Bonnie, United States, February 28, 2014

In the early 70's I was working as a research lab technician at Albany Medical College which is part of Albany Medical Center in Albany, NY. I came down with a high fever which lingered long enough to...

Personalized medicine helped my daughter walk

Personalized medicine helped my daughter walk

Renee, United States, February 28, 2014

My daughter Shelby was born in August of 2000. For the first few months, I thought everything was normal. Then I realized she wasn't able to hold her head up, and she felt limp in my arms. She became ...

Autoimmune small fiber neuropathy

Autoimmune small fiber neuropathy

Brooke, Small fiber sensory neuropathy, United States, February 28, 2014

My nightstand has over ten different prescriptions on it, more if you count supplements and things I only take as needed. I am nearly 30, a PhD student, and married to a wonderful man. I also haven't ...

Annabelles Challenge

Annabelles Challenge

Jared, United Kingdom, February 28, 2014

At just 3 yrs old our daughter Annabelle Jane Griffin 'AJ' was diagnosed with a very rare medical condition Vascular Ehlers-Danlos Syndrome, it is life threatening and incurable. Despite having no ...

Jessica and sarcoma

Jessica and sarcoma

Jessica, United States, February 28, 2014

Hi, my name is Jessica. My story began when I was 22 years old. On February 24, 2011 I went to my doctor to have a lump removed from my thigh. It didn't look suspicious and nobody, including my doctor...

CRPS and Broken

CRPS and Broken

Regina, United States, February 28, 2014

Hello my name is Gina . I was diagnosed with Chronic Regional Pain Syndrome 2 years ago next month. The day I got the news is the day my life died. I have had to learn to live again as someone else th...

Desirae and CDKL5

Desirae and CDKL5

Nancy, Canada, February 28, 2014

Hello, This is the story of my beautiful granddaughter Desirae, she has CDKL5. On September 30th, 2011 her life with us began just like that of any other “normal” baby , but it wasn’t long after that...

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