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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.
Michael. Michael.

Behcets Disease

Michael, Behçet's Disease, United Kingdom, January 25, 2019

Behcet’s Disease pronounced “Betjets” or “Besh-hays” is as I know it a persistent inflammatory condition associated with impaired auto immunity and pain. The symptoms persist and reoccur over long per...

My Itchy Baby's

My Itchy Baby's

Edith, inthrahepatic cholestasis of pregnancy, United States, January 25, 2019

In 2016 my husband and I were expecting our first son, my pregnancy was anything but easy I was constantly in the hospital with miscarriage threats I was put on bed rest. At 24 weeks I became extremel...

I am 12 years old

I am 12 years old

Megan, Spondyloepiphyseal dysplasia congenita, United States, January 24, 2019

I was normal when I was born, I was you normal healthy baby.I played softball for about 7 years, up until the fall of 2018. That was the time I started to show signs of hip and back issues. For about ...

My two months aged son has been suspected for Crigler Najjar Syndrome.

My two months aged son has been suspected for Crigler Najjar Syndrome.

Muhammad Khurram Shehzad, Crigler-Najjar syndrome, Pakistan, January 24, 2019

It is suspected that my two month old son has Crigler Najjar Syndrome. We knew this by the high level of jaundice 10 days after his birth. After a month, the doctors admitted him to the hospital and a...

Embracing My Trach Embracing My Trach

Live Laugh Love

Chae, Relapsing polychondritis, United States, January 24, 2019

Hi I'm Korchae, I am 30 years old and I have been diagnosed with a rare disease called relapsing polychondritis. I was diagnosed in 2016 with this cartilage attacking disease. Due to my condition my a...

Itching to meet Audrey

Itching to meet Audrey

Katie, Intrahepatic cholestasis of pregnancy, United States, January 23, 2019

From the beginning I had an awful pregnancy. I just always felt awful, I couldnt eat anything all I could do was drink Coca-Cola. I was about 20 weeks and started itching i remember being at work and ...

Family living with Gardner Syndrome

Family living with Gardner Syndrome

Kevin, Gardner syndrome, Canada, January 22, 2019

Living with Gardner Syndrome has become a challenge by itself in 2018. I had the IPAA surgery back in 1993, at the time, the doctors told us once it was done you would never deal with the syndrome aga...

My Little Itch

My Little Itch

Michelle, Intrahepatic cholestasis of pregnancy, United States, January 22, 2019

This pregnancy was anything but easy. It started off with bleeding the first few months. I went to the ER several times. The first time I went I had passed a large clot, the doctor assumed I lost the ...

Gastric pacemaker surgery trial Gastric pacemaker surgery trial

My battle with numerous rare diseases

Allison, Addison’s Disease, United States, January 17, 2019

I lost 50 pounds in 3 months back in 2013, leaving me at a tiny 102 pounds and standing at 5’8 it made me look even smaller. Over the matter of a couple years and numerous doctors in the Bay Area and ...

Dani, age 6 Dani, age 6

Beautifully and Wonderfully Made

Brenda, SYNGAP1, United States, January 16, 2019

Here's our rare disease story...many of you have heard it, some have not.Danika came into this world like any other. Labor was quick, but the doctors did not bring her to me right away and when I look...

Living with PIC

Living with PIC

Lauren, Punctate inner choroidopathy with choroidal neovascularization, United States, January 12, 2019

Back in 2006 when I was 34 I was noticing an area of warped vision in my right eye. After 6 months it was finally diagnosed as PIC with CNV.  After 4 treatments of Avastin, a colorectal cancer drug, i...

Der "Bewusstseins" -Kampf der Mutter mit derselben Krankheit wie ihre Kinder

Der "Bewusstseins" -Kampf der Mutter mit derselben Krankheit wie ihre Kinder

Birsel, FMF (Familial Mediterranean Fever),AA-Amyloidose,u.a., Germany, January 12, 2019

English:Mrs.Birsel Ağca,who lives in Germany,has FMF (Familial Mediterranean Fever) disease for 20 years,and has dedicated herself to create awareness related to FMF disease.She has two kids,they also...

Me in Myanmar 2018 Me in Myanmar 2018

Growing Up With Narcolepsy

Kayla, Narcolepsy-cataplexy syndrome, United States, January 11, 2019

The breeze blew the curtains in my dark room. My eyes were glued to the glowing stick on stars arranged on the ceiling to look like constellations. I felt his finger stroke the side of my face and hot...

Me at 17 : A year and a half into treatment Me at 17 : A year and a half into treatment

Me:Just not quite yet

Owen, Kallmann syndrome, United Kingdom, January 5, 2019

At 16 my life changed.I was diagnosed with a rare condition. The condition is called Kallmann syndrome and it's main symptom is not going through puberty. To be 16 and not go through puberty puts you ...

Lori Lori

What about M.E.? Living with a little known and widely misunderstood neurological disease

Lori, Undiagnosed, United States, January 5, 2019

What About M.E.?Living with a Little Known and Widely Misunderstood Neurological DiseaseMyalgic Encephalomyelitis Chronic Fatigue Syndrome, or ME CFS for short, is the disabling disease that I’ve been...

Brianna Brianna

Over coming

Brianna, Myositis, United States, January 4, 2019

For anyone who is struggling with their rare disease. At the age of 16 I was diagnosed  with Myositis, an autoimmune disorder that attacks my muscles. This was very difficult for me at the time. I cou...

The strength is within us - Believe in your inner power and you will find the way....

The strength is within us - Believe in your inner power and you will find the way....

Katerina, Pituitary adenoma, Greece, December 29, 2018

My name is Katerina Ronga. I am a 38 year old woman, mother of an 8 year old boy and Senior Quality Manager at the largest telco in Greece (OTE Group of companies / DT Group).I was recentrly diagnosed...

Brad Brad

Twenty-One Letters... All One Word

Brad, CVID, United States, December 28, 2018

Twenty-one letters… all one word“I don’t want to alarm you, but are you bleeding from anywhere?” Those were the words that came across the phone that would change my life forever. Guardedly, I respond...

Central Pain Syndrome: Awareness Brings Hope for the Future Central Pain Syndrome: Awareness Brings Hope for the Future

Central Pain Syndrome: Awareness Brings Hope for the Future

Patti, Central Pain Syndrome, Cavernous Malformations, United States, December 17, 2018

Since 2010 I live with a rare, excruciatingly painful and poorly understood neurological pain condition known as central pain syndrome, CPS.  CPS is caused from damage to the central nervous system, a...

Rebecca Rebecca

The invisible disease

Rebecca, Primary ciliary dyskinesia, Australia, December 15, 2018

At 24 weeks pregnant we discovered our baby boy had Situs Inversus Totalis, meaning he had reverse positioning of his heart and some organs.  Apparently you can go all through out your life not knowin...


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(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.