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.
21 to 87

21 to 87

Kira, Nuerocardiogenic Syncope, hemiplegic migraines, dysautonomia, undiagnosed connective tissue disease, United States, February 29, 2020

I haven’t been sick my entire life, I was relatively “healthy” until 2018. I suffered from a mini stroke at the age of 21 and my life did a 360°. Instead of battling limbs that needed to be retaught h...

Chronically Molly

Chronically Molly

Molly, Undiagnosed Mast Cell Activation Syndrome, Undiagnosed Ehlers Danlos Syndrome type III, Idiopathic Urticaria, Conversion Disorder, United States, February 29, 2020

My name is Molly, and I'm almost 16 years old. I am from New York State and I am living with multiple chronic and rare illnesses. My journey started when I was about 12 years old. I was constantly in ...

Living with FSHD and working toward a cure

Living with FSHD and working toward a cure

Sharon, FSHD, United States, February 29, 2020

I have a rare disease – FacioScapuloHumeral Muscular Dystrophy. One in every approximately 8000 people have FSHD. I had never heard of this disease until I became sick at the age of 28. Neither had my...

Caitlyn Caitlyn

Our precious angel ♡♡

Nadine, Niemann-Pick disease type A, South Africa, February 29, 2020

Here we sit thinking that an autism diagnosis was the end of the world. Caitlyn was born on the 20th of May 2012. After a very long 23 hours in labor, we got to see our beautiful baby girl weighing 3....

My twisted face My twisted face

Segmental Dystonia

Brad, Dystonia-plus syndrome, United States, February 29, 2020

I have segmental Dystonia. I was a career firefighter/EMT.  It began with rapid eye blinking and involuntary  jaw movements. I was diagnosed with Meige Syndrome (a combination of the two affected area...

Irene's Scar Irene's Scar

This scar is the least of my worries

Irene, Sarcoidosis, Canada, February 29, 2020

I shared this photo on Facebook in early 2017. I was trying to own it. It is the scar I received as a result of the biopsy surgery that confirmed my diagnosis of Sarcoidosis. These days, having a scar...

Declare Rare...I am the face of Rare! Declare Rare...I am the face of Rare!

Life with Ehlers Danlos Syndrome

Alyssa, Ehlers-Danlos syndrome, United States, February 29, 2020

Hi, I am Alyssa and I am 20 years old. I officially received a diagnosis of hEDS when I was 17 years old. I have exhibited symptoms my whole life but doctors could never fit the puzzle pieces together...

Sandy, then and now Sandy, then and now


Dorothy, Paraneoplastic cerebellar degeneration, United States, February 29, 2020

On behalf of my brave sister Sandy, I want to raise awareness of this horribly disabling syndrome, Paraneoplastic Cerebellar Degeneration. There has been very little research done on this syndrome, wh...

A surviving warrior A surviving warrior

A Warriors Story

Nelly, Chronic pneumonia, chronic anemia, Lupus, United States, February 29, 2020

I have known Teresa for just shy of 37 years. During the last 13 years I’ve seen her suffer with chronic pneumonia, a disease for which there is no cure to date. The endless hospital stays and the phy...

Katina Katina

Mi viaje al hospital

Karla, Síndrome de Upshaw Shulman, Upshaw-Schulman-Syndrome, Mexico, February 29, 2020

Hola, mi nombre es Katia, fui diagnosticada con el Síndrome de Upshaw-Shulman, que es una enfermedad de la sangre, no produzco ADAMS13 que hace que las plaquetas se mantengan juntas por lo que deben d...

rare day rare day

Rare Day

Catarina, Scleroderma, Portugal, February 29, 2020

A RARE DAYToday, February 29, a rare day, is also the day chosen to remember rare diseases.In the European Union, it is considered a rare disease that one that affects less than 1 in 2,000 people.Each...

First Grade Teacher Photo First Grade Teacher Photo

FAP Daughter of a FAP Warrior

Leah, Familial adenomatous polyposis, United States, February 29, 2020

I am a third-generation FAPer benefitting from my mom's extensive experience living with FAP. There has been one in each generation since my maternal grandfather mutated the gene. His doctors thought ...

8 months later 8 months later

Guillain-Barre Syndrome: What’s That?

Mary Beth, Guillain-Barré syndrome, United States, February 29, 2020

I was hospitalized in June 2019 for an infected finger & I had developed cellulitis. I got a tetanus shot in the ER & was hospitalized for 3 days. Two weeks later, I started to feel sluggish. ...

Right After Last Lung Biopsy Right After Last Lung Biopsy


Kay, Wegener's granulomatosis, United States, February 29, 2020

When I was 21 my body started hurting all the time. I couldn't do the simplest of tasks and my husband had to help dress me. I cut off all my hair because lifting my arms to brush my hair hurt too muc...

Helpless and hopeful

Helpless and hopeful

Amariah, Brucellosis, United States, February 29, 2020

3 years, I never would have thought 3 years ago that I'd still be battling Brucella. I contracted brucella from working with cattle. When I got diagnosed I thought "ok, no problem. I'll take my antibi...

Living Life Living Life


Stephanie, Syringomyelia/Syringobulbia, Canada, February 29, 2020

I was diagnoised with Syringomyelia and Syringobulbia in 2009. I will always remember the day that I went to hang up a jacket and I dropped to the floor. Never felt that kind of pain before in my life...

Candace Plasmapheresis Candace Plasmapheresis

Myasthenia Gravis

Candace, Myasthenia gravis, Canada, February 29, 2020

I was diagnosed in May 2007. My right eyelid started drooping, and I thought nothing of it. A few days later, the drooping was not going away so I decided to see my doctor, who immediately advised tha...

Stiff Person Syndrome - My Diagnosis

Stiff Person Syndrome - My Diagnosis

Debbie, Stiff Person Syndrome, T1-Diabetes, Hashimoto's Thyroiditis, United States, February 29, 2020

February 18, 1994.  It was the day four - five years of elusive and progressive symptoms finally captured my entire body into a rigid, trembling immoveable mass.  Frightened to my soul and in tears, m...

Cchs strong Cchs strong

Ondine’s Curse

Santino, Congenital central alveolar hypoventilation-Hirschsprung disease syndrome, Canada, February 29, 2020

I was diagnosed with Congenital central hypoventilation syndrome and hirschprungs disease when i was just 1 month old. My parents fought hard for my life as the hospital tried to extubate me so many t...

Krystof, 5 years old Krystof, 5 years old

Living with VARS

Nicoleta, VARS, United States, February 29, 2020

Krystof is 5 years old, and 3 years ago he’s been diagnosed with VARS syndrome! The geneticists said it’s a new and rare disease, and they had no name for it but they called it VARS due to the gene wi...


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.