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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.
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...

Living with Dermatomyositis and type 1 diabetes

Living with Dermatomyositis and type 1 diabetes

Mara, Dermatomyositis, United States, August 3, 2019

I was diagnosed with diabetes when i was 11 im now 36 and 4 years ago was diagnosed with Dermatomyositis. Life has been hard my A1c levels are high but my Myositis is on remission due to IV infusions ...

Cadasil I have it. I need hope and God

Cadasil I have it. I need hope and God

Onawu, CADASIL, United States, August 3, 2019

To be honest, I feel like an alien because I have had 8 incidents since 2016. Thank God I have no brain damage. I have been toldthat my problems are complicated. I was finaly diagnosed with cadasil in...

My Body odour

My Body odour

Dinithi, Trimethylaminuria, Sri Lanka, August 2, 2019

I  am suffering from body odour issues since 2014. I was 12 back then. I somehow managed my life till 2017 I think been a child helped me.I was 16 in 2018 that's the year I found about the condition c...

Even stiff person syndrome cannot stop me!

Even stiff person syndrome cannot stop me!

Nitnem, Stiff person syndrome and related disorders, India, July 31, 2019

Imagine a life in which the brain runs twice the normal speed, with an uncertain focus jumping onto various things ; while your spine and limbs feel as stiff as rock, hands continuous ly trembling, wh...

Visual snow

Visual snow

Scarlett, Visual snow syndrome, India, July 23, 2019

I was 7 years old when i first suffered this disease .  I was scared of the floaters and dots i see . As i grow up i begin to develop my interests towards various rare diseases . Then i found a word v...

My whole world My whole world

A Challenged but Beautiful life

Yolanda, Primary ciliary dyskinesia, United States, June 28, 2019

My name isYolanda, I am in my early 30’s and living with PCD. I was born prematurely and started my life in ICU at 9days old. I struggled to breathe and stay healthy the first several years of my life...

a mystery yet to be solved

a mystery yet to be solved

alesia, Undiagnosed, United States, June 22, 2019

I was 10 years old when it all started, I woke with a migrain that made it so I could not lift my head without it throbbing intensely. No one believed me and told me that I was "too young" .. next cam...

Thoracic Outlet Syndrome

Thoracic Outlet Syndrome

Amanda, Thoracic outlet syndrome, United States, June 7, 2019

Coexisting with pain is indescribable, indefinable. Pain doesn't have a face or a physical identity, and it won't produce an image on an X-ray.I was involved in an accident in February 2018 where anot...

life with primary ciliary dyskinesia life with primary ciliary dyskinesia

Life with a rare condition

Nauwarah, Primary ciliary dyskinesia, Pakistan, June 7, 2019

'I am not ready for this day' is the first thought when I wake up in morning. I was 7 months old when my parents went to UK for a short visit, I fell from table and suffered a minor head injury, lucki...

Life @42

Life @42

Annette, Idiopathic granulomatous lobular mastitis, United States, June 5, 2019

I am 42 and just recently have been diagnosed with IGLM. I thought my doctor was joking when he delivered my diagnosis in April 2019. I'm not sure why or how I got it. I have so many questions but I r...

Une vie différente avec l'hypoparathyroïdie

Une vie différente avec l'hypoparathyroïdie

Fabienne, Hypoparathyroidism, France, April 20, 2019

J'ai 53 ans. En 2008, suite à une chirurgie pour cancer de la thyroïde, je me suis retrouvée en hypocalcémie sévère et crise de tétanie. Mes parathyroïdes ont été lésées et je devrai vivre sans parath...

Mmn

Mmn

Brandi, Multifocal motor neuropathy, United States, April 19, 2019

I am a 46 year old woman, noticed about 15 years ago my left arm was getting weak, so I went to neurologist and found that I had a bone spur splitting my c5 c6 discs, so went for the surgery had a spi...

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