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.
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 primary ciliary dyskinesia life with primary ciliary dyskinesia

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...

malias malias

Desbuquois dysplasia

Malias, Desbuquois dysplasia, Denmark, March 27, 2019

We have a little son diagnosed with desbuquois dysplasia. We would like to talk to someone with information or just experience. Please find me on facebook Camilla List or Instagram with the name morti...

Hello I’m stephanie Hello I’m stephanie

My autoimmune diseases

Stephanie, Psoriatic arthritis,Crohn’s disease,fibromyalgia,hyperthyroidism,Graves disease, United States, March 25, 2019

Hello my name is Stephanie I’m an autoimmune disease fighter and i wanted to share my story because it’s been a journey for me to have multiple autoimmune diseases and take so many medication everyday...

Von Hippel-Lindau

Von Hippel-Lindau

Heidi, Von Hippel-Lindau syndrome, United States, March 12, 2019

Von Hippel-Lindau ("VHL") is a rare disease which affects a persons ability to supress tumor growth in certain areas of the body. The research for "VHL" may hold the cure to other types of tumor progr...

My struggle with Misophonia

My struggle with Misophonia

Christina, Misophonia, United States, March 9, 2019

Age: 19I have Misophonia.It wasn't until around my early teen years when I first realized that certain noises, such as chewing and breathing, were bothering me a lot more than everyone around me. Afte...

My Ledderhose story

My Ledderhose story

Bashan, Ledderhose disease, United States, March 7, 2019

I found out I had Ledderhose in 2011. Mine are primarily in my heels. I was told the only surgical option was to have the fascia removed from the bottom of my feet. Not an option. The other is wear we...

Rare syndrome  day

Rare syndrome day

Jill, Christianson syndrome, Canada, March 5, 2019

My son that passed away October 2018 had what is called christianson syndrome is it rare enough that I could not find it on the list provided it is physical and mental development and lots of seizures...


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.