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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.
Post-SSRI Sexual Dysfunction (PSSD) Post-SSRI Sexual Dysfunction (PSSD)

The antidepressant that stole my sexuality and never gave it back to me.

Lora, Post-SSRI Sexual Dysfunction (PSSD), Italy, November 28, 2020

My name is Lora; the story I tell begins in 2013, when I was 25 years old and, suffering from a severe depression caused by my sense of loneliness, dysmorphophobia and social anxiety, I was prescribed...

My life with sarcoidosis

My life with sarcoidosis

Craig, Sarcoidosis, United Kingdom, October 27, 2020

I was always a fit and healthy person, I'd never spent anytime in a hospital up until 6 1/2 years ago when my life changed completely. It started with an out of the blue kidney stone, whilst I was wor...

Pedras no caminho, guardo todas. Um dia vou construir um castelo“.  Fernando Pessoa

Pedras no caminho, guardo todas. Um dia vou construir um castelo“.  Fernando Pessoa

MARIA, FSHD, Brazil, October 24, 2020

Pedras no caminho, guardo todas. Um dia vou construir um castelo “. Fernando pessoaMeus pais eram normais quando casaram. Tiveram três filhos. Sou a mais nova. Quando tinha seis anos, meu pai apresent...

Me & MPS

Me & MPS

Erfan, Mucopolysaccharidosis (MPS), Iran, October 24, 2020

I was born in 2006 in Tehran-Iran. I stopped growing in the first year of my life. The doctors sent my genetic test taken from my wrist to Germany and the result was MPS Type 4. There was no treatment...

Aprendendo Aprendendo


REGINA CÉLIA, Leiomyosarcoma of the corpus uteri, Brazil, October 19, 2020

Sou mãe de 3 meninos, 2 deles com uma doença rara chamada MUCOPOLISSACARIDOSE Tipo VI. Meu mais velho, Nilton faleceu aos 6 anos devido à complicações da doença. Meu caçula, Leonardo, conseguiu vir se...



LUIS EDUARDO, Mucopolysaccharidosis type 6, Brazil, October 19, 2020

Fui diagnosticado aos 2 anos e 6 meses, por conta do meu irmão mais velho, já na época, em investigação de diagnóstico, para Mucopolissacaridose. A investigação somente se concretizou 2 anos depois, c...

2013 2013

Desbuquois Syndrome

Mithat, Desbuquois syndrome, Turkey, October 19, 2020

2013 yılında Ankara Hacettepe Üniversitesi hastanesinde doğdum.Desbuqois sendromu teşhisi konuldu.Ortapedik ve idrar yolları ameliyatları oldum.Şu an 7 yaşındayım ve boyum 85 cm dir. Kilom ise 13 kg. ...

Ortiz.Scleroderma Ortiz.Scleroderma

My Scleroderma Journey

Rowena, Scleroderma, Philippines, October 13, 2020

Scleroderma is a group of rare diseases on Orphanet, but the exact type is not specified within this story. I think it is ok to publish though. Daisy 15/10In 2004 while undergoing marital and financia...

My family My family

Our 14 year battle searching for the right diagnosis

Gordana, Alport syndrome, North Macedonia, October 10, 2020

My name is Gordana, a mother or three – Emilija, Andrej and David. My daughter Ema was born twenty-five years ago, a healthy baby with the occasional fever and sore throat. Six years later I gave birt...

Happy to be Alive

Happy to be Alive

Sandra, Moyamoya Disease, United States, September 30, 2020

As a kid I was what they said very clumsy they said make sure she wore high top sneakers. I was always tripping over my feet and even broke my front tooth doing so.Things where very strange I sometime...

Rare but wonderful as you are... Rare but wonderful as you are...

My life living with Soto syndrome

Ruhan, Sotos syndrome, South Africa, September 30, 2020

Hi everyone my name is Ruhan and i was born wish Soto syndrome ...I would like to tell a short story of my life living with Soto syndrome. When I was 5 years old I was diagnosed with Soto syndrome ......

Our Family Our Family

Two sweet sisters, battling one ultra-rare disease

Mariah, Undiagnosed (suspected THAP12 recessive mutations), Epilepsy, Infantile Spasms, Lennox-Gastaut Syndrome, Cortical Visual Impairment, Dysphagia, Hypotonia, Global Developmental Delay, United States, September 8, 2020

Emma and Abby are two sisters that share more than just a sibling bond, they also share an ultra-rare disease; one that has never been seen before. These young sisters are the first two cases in the w...

A UK patient perspective on Mal de Debarquement Syndrome

A UK patient perspective on Mal de Debarquement Syndrome

Polly, Mal de débarquement, United Kingdom, September 8, 2020

A UK patient perspective on Mal de Debarquement Syndrome.Although it is coded as an inner ear condition, Mal de Debarquement Syndrome (MdDS) is now considered to be a rare neurological condition. It i...

Benji’s first birthday Benji’s first birthday

Benji’s Hirschsprungs Diagnosis

Julia, Hirschsprung disease, United States, August 18, 2020

It was our third day in the NICU… My husband and I went home to visit our older girls and to grab a few things for our hospital stay. When we returned, there were people swarming around Benji’s room a...

My girl with her girl My girl with her girl

My more than one in a million

Sue, Pulmonary capillary hemangiomatosis, United Kingdom, July 20, 2020

So this is my story - sadly one without a happy ending My Daughter Jeni was 19 - days days off her 20th birthday she had an 11 week old baby and was a far as anyone knew healthy however she was living...

just recently celebrated 3 years since I had surgery! just recently celebrated 3 years since I had surgery!

My Journey with CTEPH

Chloe, Chronic thromboembolic pulmonary hypertension, United States, July 16, 2020

I was diagnosed with chronic thromboembolic pulmonary hypertension at the end of 2016, my sophomore year of high school. Getting to the diagnosis was quite difficult though. I was having a hard time b...

Melissa Melissa

Living with a rare metabolic disease

Melissa, Glycogen storage disease type 9b, Netherlands, July 6, 2020

Hi, I'm Melissa Quekel 23 years old and I live in the Netherlands with my fiance Bart. When I was 1 year old, I was diagnosed with type 6 glycogen storage disease. I was a very ill child and therefore...

We Got There In The End We Got There In The End

The most important year of my life

Justine, Orbital Myositis, United Kingdom, July 1, 2020

I was 20 years old and in my final year at University, I spent 2 months with severe headaches and eye pain. It was affecting my job and affecting my school work, so I finally went to the doctor, she d...

Dating for Individuals with Medical Conditions Dating for Individuals with Medical Conditions

Advocates for Love and Rarity

Jack & Chandler, Fanconi Anemia & Epilepsy, United States, June 29, 2020

We are Jack and Chandler from Chicago, IL. Jack was born with Fanconi Anemia (FA), a rare DNA repair deficiency and bone marrow failure genetic condition, and Chandler has been living with Epilepsy si...

Matei's Story Matei's Story

Matei's Story

Cristina, Mitochondrial DNA Depletion Syndrome Type 7 (or IOSCA), Romania, June 12, 2020

Matei's Story Matei was born on August 5th 2018, being an extremely healthy child.He has had an exciting development period. From the newborn to an active toddler he reached all the milestones that a ...


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