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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.
Living

Living

Marion, United States, February 11, 2016

Everyone has battles. Everyone has issues in their day to day life. Mine go a little deeper than most. My is not just emotional. Its physical. I have Myasthenia Gravis aka Grave Muscle Weakness. My ow...

PurA Syndrome - Carter Peddie

PurA Syndrome - Carter Peddie

Will, United States, February 11, 2016

At three weeks old Carter contracted the respiratory syncytial virus (RSV), turned blue and stopped breathing. In the PICU Carter was on breathing and feeding tubes, and breathing treatments for ten d...

Livedoid Vasculopathy

Livedoid Vasculopathy

Kenisha, United States, February 11, 2016

I've been living with LV (livedoid vasculopathy) for 5 years now, i've tried medicine after medicine, and many different doctors not really caring about it because they have no knowledge of it because...

rear disease called autoimmune enteropathy

rear disease called autoimmune enteropathy

Busisiwe, South Africa, February 10, 2016

my name is Busisiwe mabedla i am 16 years old now and i am living with autoimmune enteropathy which is a very rear disease. when i was three months old i got very sick that i was in hospital for thre...

My husband Larry

My husband Larry

Donna, United States, February 10, 2016

Larry had posterior cortial atrophy. Back of the brain. Lost most of his sight couldnt dress himself. His thinking process was effected. Passed away 5 years after diagnosis. When he was diagnosed he w...

Curren's Journey

Curren's Journey

Curren, United States, February 10, 2016

My son is two years old, and has seen 12 different doctors. His weekly schedule is jammed packed with 11 hours of therapy – PT, ST, OT, ABA, ITDS – a sea of simplified acronyms for a world that is so ...

Make Masto Known!

Make Masto Known!

Sophia, United States, February 10, 2016

I hear all these wonderful stories about kids and adults with rare diseases, and how they function in life. I hear about rare disease day, the 29 of February, and usually think to myself, "I have a ra...

Alexanders disease

Alexanders disease

Kayleigh, United Kingdom, February 9, 2016

My 2.5 little girl has recently been diagnosed with alexanders disease a very rare life threatning / changing / shortening disease !!:" devistating as she is only 2 and a half lets fight rare diseases...

Familiäres Mittelmeer Fieber &unsere Geschichte

Familiäres Mittelmeer Fieber &unsere Geschichte

Birsel, Germany, February 9, 2016

Familiäres Mittelmeer Fieber und wir Ehrlich gesagt, ich weiß nicht wo ich anfangen soll, unsere Geschichte zu erzählen. Ob ich jemals schaffen werde es als ein Buch herauszubringen, ist eine ande...

Narcolepsy & Life

Narcolepsy & Life

Joseph, United States, February 9, 2016

My name is Joseph, Im 13 and was diagnosed at 7 with narcolepsy with Cataplexy. Ever really sense then, the one person I had most in common with, was my mom. (who also had it) Till about the end of la...

MI hijo y la enfermedad de kawasaki

MI hijo y la enfermedad de kawasaki

Marianela, Europe, February 9, 2016

La historia de Ismael y la enfermedad de KAWASAKI Se desconoce la causa de la enfermedad o síndrome de kawasaki, pero presenta síntomas comunes a las enfermedades de la etapa infantil, lo que retra...

My Voice for RARE

My Voice for RARE

Christine, Kenya, February 9, 2016

I'm a mother to two lovely girls with rare diseases. One has Hemihyperplasia and Hydrocephalus, while the other has Ring 18 Chromosome. I raise my voice for rare diseases so that my children, and the...

Sibling's with brain bleeds

Sibling's with brain bleeds

Lori, United States, February 9, 2016

Our son Colton was diagnosed with Cerebral Cavernous malformation at 2 and a half years in November 2014. A week prior the seizures began which had they not we wouldn't have known about the bleeding h...

Living with UCMD

Living with UCMD

Chelsea, United States, February 9, 2016

When I was born there was something different about me. I was born with floppy hands and feet. My mom knew there was something wrong but the doctors just thought I had low muscle tone. I got diagnosed...

just found out

just found out

Latha, United States, February 8, 2016

A few months ago we found out that my 11 year old has 16p11.2 microdeletion syndrome. Kegan has been developmentlly delayed, has dyslexia, and not as flexible as others his age. He is extremely sensit...

My daughther the ticking time bomb living for 14 years with an undiagnosed rare disease

My daughther the ticking time bomb living for 14 years with an undiagnosed rare disease

rachel, United Kingdom, February 8, 2016

Dear keeper of the equilibria of life, I have a problem, My scales are a little unbalanced, quite like my mind at the moment, having kids is more difficult than any career choice in the universe! In ...

A fight for a diagnosis of Blount's Disease

A fight for a diagnosis of Blount's Disease

Sophie, United Kingdom, February 7, 2016

My daughter Elsie has recently been diagnosed with Blount's Disease after fighting for over a year for a diagnosis! Elsie started walking at the early age of 9 months. At 11 months I noticed both of E...

My son Ross

My son Ross

LINDA, United Kingdom, February 6, 2016

Ross is 18. He has Langerhans Cell Histiocytosis, Hypopituitarism, Cerabella Ataxia and Epilepsy.Ross was 2 when he diagnosed with Langerhans Cell Histiocytosis, treated with chemotherapy, he is on ho...

Braelyn's Cutaneous Systemic Mastocytosis

Braelyn's Cutaneous Systemic Mastocytosis

Amanda, United States, February 5, 2016

Before yesterday we were a family of four with one of our little girls who had what we thought was an allergic response to milk and soy. After months of searching for what caused our baby to vomit fre...

I battle CRPS every moment of every day.

I battle CRPS every moment of every day.

Roxanne, United States, February 5, 2016

I battle CRPS every moment of every day. Living w/ CRPS has changed every aspect of my life. Even on the worst days when it's flaring out of control, I won't allow it to take away my smile or hope for...

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(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.