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.
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...



serdar, Mowat-Wilson syndrome, Turkey, March 5, 2019

merhaba benim adım TUNÇ izmir Türkiye de yaşıyorum 7 yaşındayım 2012 yılında mws doğdum yürüyemiyorum konuşamıyorum desteksiz oturamıyorum. enbüyük desteği annem ve babam dan alıyorum müzik dinlemeye ...

Lakshmi Lakshmi

The Feeling of Dread

Lakshmi, Relapsing polychondritis, United States, March 4, 2019

"Not Again," was my first thought when my doctor told me that my immune system is attacking me and causing the inflammation that is making both my ears red, swollen, tender (not to mention painful). H...

Tyliah Tyliah

Wolman Disease took our granddaughter & grandson

Selena, Wolman disease, United States, March 3, 2019

Our granddaughter Tyliah was diagnosed with Wolman Disease when she was 3 months old. We spent a lot of time at Vanderbilt Children’s Hospital. She started getting infusions of a drug called Kanuma. W...

Sierra Sierra

My daughter Sierra

Lora, Prader-Willi syndrome, United States, March 3, 2019

My daughter Sierra has surivived more in her life then most adults. From being born with Prader wills syndrome, to having diabetes, to having a massive stroke at 17 yrs old she is my hero during all t...


Share your story

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