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.
Myself and my son Myself and my son

Keep going!

Julie, Hypoparathyroidism, United States, February 28, 2019

I had a complete thyroidectomy and due to scar tissue 1 parathyroid glam was removed causing the other to quit working. I have had trouble for several years getting my thyroid hormone levels regulated...

Moi, et mon mari ! Moi, et mon mari !

Apprendre à vivre un jour après l'autre !

Nathalie, Multiple endocrine neoplasia type 1, France, February 28, 2019

Je m'appelle Nathalie et je vais vous raconter mon histoire avec la NEM 1 (Neoplasie Endocrinienne Multiple de type 1). Cette maladie provoque l'apparition de tumeurs, souvent endocriniennes (mais pas...

I don't 'see' why...

I don't 'see' why...

Todd, Blepharospasm-oromandibular dystonia syndrome, United States, February 28, 2019

11 years ago I was standing in my daughter's living room, when her husband looked at me and asked: "do you need some eyedrops?" Huh? "Why do you ask?""Your blinking a lot." Sure enough, I hadn't reall...

a good moment a good moment

Sometimes its just about surviving

Hannah, Tuberous sclerosis complex, Austria, February 28, 2019

Our daughter Hannah was diagnosed with TSC when she was 2 months old. TSC causes her body to grow benign tumors in soft parts, massively in her brain. She has seizures everyday, skin signs, eye condit...

Jude Anthony at 5yrs old Jude Anthony at 5yrs old

Jude’s Journey

Amy, Hirschsprung disease, United States, February 28, 2019

Hello! I’m Jude and I have Hirschsprungs. I was born and sent home from the hospital even though I never pooped. The hospital made a mistake and that’s ok. We all make mistakes. A few days came and we...

Facing the unknown with PBD

Facing the unknown with PBD

Makenzie, Peroxisome biogenesis disorder, United States, February 28, 2019

I want to share the story of our beautiful daughter, Fynlee. I hope to share what life is like when faced with a disease you or the doctors don't know much about.My name is Makenzie, I am 23 years old...

Jessica Jessica

I have AIP, it does not have me.

Jessica, Acute intermittent porphyria, United States, February 28, 2019

My name is Jessica and I have Acute intermittent porphyria.When I was twelve, I was bitten by an infected mosquito and contracted Spinal Meningitis as well as Encephalitis at the same time. During thi...

What I Thought Was the Flu...

What I Thought Was the Flu...

Sharan, GPA, United States, February 28, 2019

I thought I had the flu, and after several days in my local hospital, I was told I had terminal lung cancer. After a second look, doctors decided it wasn't cancer, but they knew I needed to get to a d...



Katie, Misophonia, United States, February 28, 2019

My daughter suffers from Misophonia. She struggles with the way I pronounce the letter “S” in any word. Therefore, it’s been almost impossible to have a relationship with her. My heart is broken by th...

Natalie Natalie


Natalie, Complex regional pain syndrome, United States, February 28, 2019

My daughter, Natalie, was diagnosed with CRPS in 2017.  Since then she has had periods varying from no pain at all, to being confined to a wheelchair and walker and is now back to walking with PT.CRPS...

I was born this way!

I was born this way!

Angelica, Tuberous sclerosis complex, United States, February 28, 2019

I was born with Tuberous Sclerosis Complex. My mother passed it on to me and my brother without knowing. She never really had any symptoms. My brother at the age of 4, had seizures and was treated &am...

My 20th birthday My 20th birthday

Living With CREST Syndrome

Eleanor, CREST Syndrome, United States, February 28, 2019

I was diagnosed with CREST Syndrome in October of 2017 right after my 19th birthday. CREST, also known as Limited Scleroderma, is a rare autoimmune/connective tisssue disease. It's not easy, almost no...

Me Me

Metabolic Mayhem: Living with Lipodystrophy

Sonia, Familial partial lipodystrophy, Dunnigan type, Canada, February 28, 2019

The two people in my life that lived with lipodystrophy, died before the age of 35; my mother and sister. The journey of living and coming to terms with my disease has been an arduous struggle on all ...

Lichen Sclerosus

Lichen Sclerosus

Sarah, Lichen Sclerosus, United States, February 28, 2019

Lichen Sclerosus is a debilitating disease that affects usually the genital area but can be anywhere on the body with the loss of anatomy, functions, cosmetics, etc. including itching, tearing, fissur...

My Rare Daughter

My Rare Daughter

Holly, Tuberous sclerosis complex, United States, February 28, 2019

We were living in Okinawa, Japan, where my husband was stationed. While I was getting a regular pre-natal check up they noticed an irregular heart beat. They in turn gave me steroid shots to develop t...

Leila Leila

Our Little Miss Sunshine

Kelly (on behalf of my daughter, Leila), Undiagnosed (possible connective tissue disorder), United States, February 28, 2019

Our sweet Leila was born on December 29, 2014. She was born at 39 weeks and was 8 lbs, 2 oz. There were no complications during her birth; in fact, it was an easy labor and delivery. When we got home,...

Degos Disease

Degos Disease

Jane, Degos disease, United States, February 28, 2019

Was diagnosed with Degos in 1996. I had a heart attack due to this disease in 2000. Took down my right artery. Looks like butterfly netting according to my cariologist. This disease causes the red blo...

Life with Addison’s

Life with Addison’s

Sharon, Primary Addison’s disease, United Kingdom, February 28, 2019

It all started in 1997, I was working as a stewardess for a British airline, until I could no longer fly or function normally. The most basic of everyday chores, like getting up, getting dressed, brus...

My mum. My mum.

MSA stole my mum.

Jackie, Multiple system atrophy, United Kingdom, February 28, 2019

My mum, Pat was diagnosed with MSA in 2007 and passed away five years later in 2012.She was 76, far too young to be cared for in a nursing home, her MSA robbing her of attending her daughter's wedding...

Lupus erythematodes

Lupus erythematodes

Jule, Lupus erythematosus tumidus, Germany, February 28, 2019

Diagnosed when I was 18. Since then the disease comes and goes irregularly. Can't be in the sunlight for too long because UV triggers a new onset. If this happens the skin on my body gets red spots on...


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.