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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.
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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...

Cystic Angiomatosis

Cystic Angiomatosis

Naomi, Cystic Angiomatosis, United Kingdom, March 2, 2019

Hi,In September of last year I was incorrectly diagnosed with metastatic cancer with an unknown primary (aged 36). After multiple biopsies and a splenectomy I have now been diagnosed with Cystic Angio...

Rare Disease: Fibrosing Mediastinitis

Rare Disease: Fibrosing Mediastinitis

Dawnyell, Fibrosing mediastinitis, United States, March 1, 2019

I was recently diagnosed with this rare disorder a few weeks ago called Fibrosing Mediastinitis. Currently this condition is not curable and since it was left untreated, it has caused major complicati...

Isaac's and 3 ANES

Isaac's and 3 ANES

Juliana, ANE, Brazil, March 1, 2019

Gender: MaleAge: 6 yearsDiagnosis:  SUSCEPTIBILITY TO ACUTE INFECTIOUS INDUCED ENCEPHALITIS 3.No. OMIM: 608033 mutation in the gene RANBP2 Presence in: Heterozygosis (one copy). He already suffered 3 ...

Me Me

Art & My Life

Nur, Mucopolysaccharidosis type 4A, Malaysia, March 1, 2019

I have been diagnosed with Mucopolysaccharidosis type 4A. Art is my life. After finishing secondary school, I went to music/keyboard class, then learnt Folk Art, and I am now continuing my love toward...

Making the most out of each day Making the most out of each day

I may have a disease but this disease does NOT have me!

Liz, Idiopathic subglottic stenosis, United States, March 1, 2019

I have a rare disease that suddenly changed my life. I went to bed whole but woke up a changed mother and wife.I used to play with my kids and have all the fun. Played softball with my Lover and loved...

Interstial cystitis

Interstial cystitis

Jessica, Interstitial cystitis, United States, March 1, 2019

This is my rare disease and it causes me to urinate up to 60 times a day and it is an incurable disease!  Interstitial cystitis, also known as bladder pain syndrome (IC/BPS), is a rare chronic debilit...


My struggle with GBS

Xochitl, Guillain-Barré syndrome, United States, March 1, 2019

Hi my name is Xochitl, this is my GBS story.I always had been totally independent; I raised two girls by myself. The first tragedy in my life was when my mom died when I was about 28, it was devastati...

My experience with AIH

My experience with AIH

Sandy, Autoimmune hepatitis, United States, February 28, 2019

I am 35 years old. I have had autoimmune Hepatitis (AHI) for over 9 years. Awareness in AHI is important because some of the symptoms get overlooked. In my case, I was always tired, sleepy and not hun...

2018 2018

Life with multiple diseases

Alexandrina, Dermatomyositis, United States, February 28, 2019

Being 19 and having in total 9 illness is exhausting, I'm never truly in the driver's seat. I have a rare condition that is 1 in 3 million, there is no cure and the treatment is long, I take chemo wee...

Training at Vertical Adventures for the upcoming National Adaptive climbing competition. Training at Vertical Adventures for the upcoming National Adaptive climbing competition.

One climb at a time!

Keith, Klippel-Feil syndrome, Holoprosencephaly, pulmonary fibrosis, United States, February 28, 2019

I am an overcomer. I have multiple medical complexities that have not kept me down. Multiple doctors, teachers said there was things I would never do. And while there is somethings I struggle with I a...


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.