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.
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...

Misophonia

Misophonia

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

CRPS

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...

Kaela Madison Kaela Madison

Aicardi Syndrome

Stephanie, Aicardi syndrome, United States, February 28, 2019

When Kaela was in utero, we found out Kaela had an abnormality of the brain. Kaela has Agenisis of the Corpus Collosum, the part of the brain that connects both sides did not develop. It wasn’t until ...

Always hopeful Always hopeful

“Just breathe” is not so easy

Niki, subglottic stenosis, United States, February 28, 2019

After several surgeries for endometriosis and 6 rounds of IVF, I was pregnant with my second miracle baby and was struggling to breathe. A friend urged me to see an ENT, so I did. He said my airway wa...

Starting College Right

Starting College Right

JC, Intralobar congenital pulmonary sequestration, United States, February 28, 2019

It was winter of my freshman year of college when I began getting very sick. I would progressively go into states of barely being able to breath and shivering. I was diagnosed with pneumonia that sent...

Surviving Subglottic Stenosis

Surviving Subglottic Stenosis

Joanie, subglottic stenosis, Canada, February 28, 2019

I was an active mom, wife and person who worked full-time, was studying at a Graduate level and just trying to live life to the fullest in my late 30's.  I was still trying to play sports when I was a...

Megan's Surgical Halo Brace Removal (neck instability) 12/1/16 Megan's Surgical Halo Brace Removal (neck instability) 12/1/16

We Don't Want Your Head to Pop Off

Megan, Ehlers-Danlos syndrome, United States, February 28, 2019

First published by: Love What MattersHow in the world does one go from being an athlete to becoming a “professional patient” and enduring 35 surgeries all because of ONE fall? It sounds made-up. I can...

Even the nephrologist hadn't heard of it

Even the nephrologist hadn't heard of it

Toni, Gitelman Syndrome, United States, February 28, 2019

After years of searching for answers and being blown off by doctors, my husband Billy was finally given a diagnosis of Gitelman Syndrome in June 2011.His very first clue that something may be wrong ca...

Long journey to diagnosis

Long journey to diagnosis

Ann, subglottic stenosis, United States, February 28, 2019

At age 40 I began to train to run a half marathon.  Before I reached my goal I was coughing all the time, misdiagnosed with sinus issues that resulted in a surgery that didn't fix anything, misdiagnos...

X

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.