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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.
Chylles Madalyn Chylles Madalyn

Chylles' ROHHAD Fight

Stacie, ROHHAD, United States, November 6, 2019

Chylles Madalyn was healthy, high energy little girl with no fears, no worries & full of life. That's before she was affected by ROHHAD symptoms just prior to her 3rd birthday. After a year long b...

Tumbelina

Tumbelina

Ernestina (Ernie), Silver-Russell syndrome, United States, October 27, 2019

I had to show my California ID, when I was already over 18 to a lady that works at Walmart so I could get a sample of a pizza that was being sold. Yup, just for a slice of pizza, I mean I laughed it o...

No limitations

No limitations

Larry, Klippel-Feil malformation, United States, October 25, 2019

Hello, This is not my story, but of my grandson. Back in 2012, I was blessed with my first grandchild. Jayden came into our lives and we were blessed. In the hospital, I noticed that something wasn't ...

A Rare Reality

A Rare Reality

Shilpi, GNE myopathy, India, October 22, 2019

A short film on GNE Myopathy patient Shilpi and narrated in her own words. Shilpi is a lawyer and currently teaches at O.P Jindal Global University. It was only in her twenties that she learnt that sh...

My son has donnai barrow syndrome

My son has donnai barrow syndrome

Tarah, Donnai-Barrow syndrome, United States, October 20, 2019

My son was diagnosed with Donnai-Barrow syndrome. 

Sudden loss of leg control

Sudden loss of leg control

juares, Undiagnosed, Spain, October 13, 2019

Time to time, suddenly, I lose control and sensitivity in my legs. Then I fall down.It's long for aprox. 15 minutes.Nobody knows what is it.

Rare kidney syndrome with no public awareness

Rare kidney syndrome with no public awareness

Jessica, Renal nutcracker syndrome, United States, October 11, 2019

I was diagnosed with Nutcracker syndrome 2 years ago. I had multiple unexplained symptoms for years that all resulted from this rare syndrome. It wasn't until I had an appointment with a new doctor, t...

Battling MWS (Muckiest-Wells Syndrome)

Battling MWS (Muckiest-Wells Syndrome)

B, Muckle-Wells syndrome, United States, October 10, 2019

By the summer of 2016, we've been to just about every doctor possible and through countless procedures in the hopes of finding answers with what's going on with with my daughter. It was also the summe...

Simona Simona

Simona's Story

Grasiela, Hypotonia-speech impairment-severe cognitive delay syndrome, Poland, October 3, 2019

Simona is a 13 year old Polish girl who was born on the 21st April 2006 in Wexford General Hospital. At birth everything was fine but after 3 months developmental issues started to show. Simona has be...

رحلة كفاح

رحلة كفاح

هبه, Mucopolysaccharidosis type 4, Somalia, September 28, 2019

فتاة تبلغ من العمر 18 سنه عاشت حياتها مع مرض نادر هو مرض عديد السكاريد المخاطي من النوع الرابع اكتشفت بهذا المرض عندما كان عمرها 9 سنوات، وهذا المرض جعلها تعيش حياتها بين المستشفى و بيت ولكن هي لم تست...

My Journey - EGPA Style

My Journey - EGPA Style

Paul, EGPA, Congenital myasthenic syndrome, Australia, September 25, 2019

Hi I’m Paul and this is my story so far….A long time ago in a galaxy far beyond the black stump lived a hermit trying to get by with his electrical contracting business. This hermit was supposed to ha...

Maladie des os de verre

Maladie des os de verre

Laure, Osteogenesis imperfecta, France, September 13, 2019

Bonjour je suis nee avec la maladie des os de verre. Jai passé mon enfance dans des plâtre. Pas de sport, pas de risque... On crois que sa passe a l'adolescence on l'oublie, mais en faite a 30 ans on ...

tired of being tired

tired of being tired

jamilla, undiagnosed, United States, September 5, 2019

Hello My name is Janice mother of Jamilla and I am writing on behalf of my daugher Jamilla. As a mother you always want to say its ok but very difficult to say that whne it no solution to her issues. ...

AN ENCOUNTER & COPING UP WITH A RARE CONDITION

AN ENCOUNTER & COPING UP WITH A RARE CONDITION

Rachit, Isaac syndrome, India, August 28, 2019

AN ENCOUNTER & COPING UP WITH A RARE CONDITION                                 by Rachit  This is written at a time when it’s as serious, an issue as Climate Change & Impact.Rare Health Condit...

Hereditary Angioedema Hereditary Angioedema

How Advocacy for Hereditary Angioedema can save lives

Jill, Hereditary angioedema type 3, United States, August 22, 2019

My name is Jill, I am 35 years old, and by the looks of me most of the time, I am a normal green haired, tattooed mega nerd from Northern California. I can often be found wearing bright, bold clothes,...

Ben Arda Mert Gökmen Ben Arda Mert Gökmen

Sistinozis ile yaşamayı öğreniyorum

Gülnur, Cystinosis, Turkey, August 18, 2019

Merhaba oğlum Arda . Altı aylıkken Sistinozis olduğunu öğrendik. Önce çok korktuk. Organlarını tek tek kaybedeceğini zannediyorduk. Onlarca ilaç ve belki diyaliz belkide nakil olacaktı. Sistinozis öğr...

On the Road AGAIN!!

On the Road AGAIN!!

Amy, Scleroderma, United States, August 15, 2019

Here I am again on the road. I spend more than half of my life in cars driving to and from Hospitals, Clinics, Doctor’s Offices and Treatment Centers. I guess you could say it’s just par for the cours...

My daughter's battles

My daughter's battles

Rachel, Acute necrotizing encephalopathy of childhood, Canada, August 8, 2019

Spring came early in 2009, our then 3-year-old daughter is an avid puddle jumper and my 9-month-old son has an ear infection. I am sleep deprived; my husband and daughter decides that it’s the perfect...

Just me! Just me!

The Skin I live in

Amy, Scleroderma, United States, August 7, 2019

I have spent the majority of my adult life SICK. When I say sick I am not speaking about a common cold or even a appendicitis. My last year as a teenager I was diagnosed with a rare chronic AutoImmune...

Living with Multiple Hereditary Exotoses  (MHE)

Living with Multiple Hereditary Exotoses (MHE)

Keidi, Multiple Hereditary Exostoses, Canada, August 6, 2019

Hi my name is Keidi and this is my story with Multiple Hereditary Exotoses. (MHE)It all started when I was 2 when my mom started to notice bumps all down my spine. When my mom took me to my pediatrici...

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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.