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.
Living with Multiple Hereditary Exotoses  (MHE)

Living with Multiple Hereditary Exotoses (MHE)

Keidi, Multiple Hereditary Exostoses, Canada, August 6, 2019

Hi my name is Keidi and this is my story with Multiple Hereditary Exotoses. (MHE)It all started when I was 2 when my mom started to notice bumps all down my spine. When my mom took me to my pediatrici...

Living with Dermatomyositis and type 1 diabetes

Living with Dermatomyositis and type 1 diabetes

Mara, Dermatomyositis, United States, August 3, 2019

I was diagnosed with diabetes when i was 11 im now 36 and 4 years ago was diagnosed with Dermatomyositis. Life has been hard my A1c levels are high but my Myositis is on remission due to IV infusions ...

Cadasil I have it. I need hope and God

Cadasil I have it. I need hope and God

Onawu, CADASIL, United States, August 3, 2019

To be honest, I feel like an alien because I have had 8 incidents since 2016. Thank God I have no brain damage. I have been toldthat my problems are complicated. I was finaly diagnosed with cadasil in...

My Body odour

My Body odour

Dinithi, Trimethylaminuria, Sri Lanka, August 2, 2019

I  am suffering from body odour issues since 2014. I was 12 back then. I somehow managed my life till 2017 I think been a child helped me.I was 16 in 2018 that's the year I found about the condition c...

Even stiff person syndrome cannot stop me!

Even stiff person syndrome cannot stop me!

Nitnem, Stiff person syndrome and related disorders, India, July 31, 2019

Imagine a life in which the brain runs twice the normal speed, with an uncertain focus jumping onto various things ; while your spine and limbs feel as stiff as rock, hands continuous ly trembling, wh...

Visual snow

Visual snow

Scarlett, Visual snow syndrome, India, July 23, 2019

I was 7 years old when i first suffered this disease .  I was scared of the floaters and dots i see . As i grow up i begin to develop my interests towards various rare diseases . Then i found a word v...

My whole world My whole world

A Challenged but Beautiful life

Yolanda, Primary ciliary dyskinesia, United States, June 28, 2019

My name isYolanda, I am in my early 30’s and living with PCD. I was born prematurely and started my life in ICU at 9days old. I struggled to breathe and stay healthy the first several years of my life...

a mystery yet to be solved

a mystery yet to be solved

alesia, Undiagnosed, United States, June 22, 2019

I was 10 years old when it all started, I woke with a migrain that made it so I could not lift my head without it throbbing intensely. No one believed me and told me that I was "too young" .. next cam...

Thoracic Outlet Syndrome

Thoracic Outlet Syndrome

Amanda, Thoracic outlet syndrome, United States, June 7, 2019

Coexisting with pain is indescribable, indefinable. Pain doesn't have a face or a physical identity, and it won't produce an image on an X-ray.I was involved in an accident in February 2018 where anot...

Life with a rare condition Life with a rare condition

Life with a rare condition

Nauwarah, Primary ciliary dyskinesia, Pakistan, June 7, 2019

'I am not ready for this day' is the first thought when I wake up in morning. I was 7 months old when my parents went to UK for a short visit, I fell from table and suffered a minor head injury, lucki...

Life @42

Life @42

Annette, Idiopathic granulomatous lobular mastitis, United States, June 5, 2019

I am 42 and just recently have been diagnosed with IGLM. I thought my doctor was joking when he delivered my diagnosis in April 2019. I'm not sure why or how I got it. I have so many questions but I r...

Une vie différente avec l'hypoparathyroïdie

Une vie différente avec l'hypoparathyroïdie

Fabienne, Hypoparathyroidism, France, April 20, 2019

J'ai 53 ans. En 2008, suite à une chirurgie pour cancer de la thyroïde, je me suis retrouvée en hypocalcémie sévère et crise de tétanie. Mes parathyroïdes ont été lésées et je devrai vivre sans parath...



Brandi, Multifocal motor neuropathy, United States, April 19, 2019

I am a 46 year old woman, noticed about 15 years ago my left arm was getting weak, so I went to neurologist and found that I had a bone spur splitting my c5 c6 discs, so went for the surgery had a spi...

Amani The Brave Amani The Brave

Life with Acrodermatitis Enteropathica

Zainabu, Acrodermatitis enteropathica, Sierra Leone, April 18, 2019

Hi. My name is Zainabu. I am the mother of a beautiful young girl named Amani. She was diagnosed with Acrodermatitis Enteropathica at 1 years old after an almost near death experience. She had sores a...

My fight against this disease My fight against this disease

Fabry disease by Ludovic

ludovic, Fabry disease, Belgium, April 13, 2019

My name is Ludovic I’m 40 I have Fabry’s disease not having had the chance to be like the others being small. I decided to fight my illness enjoying life as if every moment was the last. I want to sen...

our story

our story

danielle, idiopathic ketotic hypoglycemia, Denmark, April 12, 2019

Our story Issues with multitasking, excessive activity and restlessness, poor planning and disorganization, lack of focus, issues with memory loss, issues with on-going depression and years of issues ...

Making the most of life Making the most of life

Living like every day could be your last!

Theresa, Idiopathic Intracranial hypertension, United Kingdom, April 5, 2019

I have a rare disease that suddenly changed my life. One day I was me Theresa the next I was someone I didn’t recognise, who I did like or who I wanted to be. It changed me I was no longer the person ...


Alexander the Great

Jessica, Phelan-McDermid Syndrome 22q13.3deletion, United States, April 3, 2019

Alexander was born with a rare, de novo, chromosomal deletion (22q13.3). With a healthy pregnancy it was a complete surprise when he was born with breathing difficulties and jaundice. He also had hypo...

My Life with AVN

My Life with AVN

Chloe, Avascular necrosis, United States, April 3, 2019

I am 20 years old and have had Avascular Necrosis of the right femoral hip head since I was 7 years old. I cannot remember much of when the doctor first diagnosed me but I do remember him saying I wou...

Pelvis Pelvis

Cystic angiomatosis

Suzanne, Cystic angiomatosis, United Kingdom, April 2, 2019

Hi Im 37 years old and my name is Suzanne. I was diagnosed with a rare condition called cystic angiomatosis 2 years ago.  I see a specialist regularly and have regular scans. My symptoms seem to be ge...


Share your story

(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.