Tell your story!

Share your photos, videos and your experiences!

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.
Living without an immune system for a while

Living without an immune system for a while

Roman, Juvenile dermatomyositis, JDM, United States, February 29, 2020

When I was three, which I am 9, I was diagnosed with Juvenile Dermatomyosistis, which was medium severe. My mom took me to the doctor to see if I was okay. I visited a rheumatologist to see what was h...

Va de l'avant... Va de l'avant...

Nouvelle direction

Pat, FMD fibromuscular dysplasia, Switzerland, February 29, 2020

Bonjour, Je m'appelle Patricia j'ai 56 ans et je suis mariée, j'ai deux filles de 36 et 34 et deux petits enfants de 10 et 8 ans. En 2018 je n'étais pas vraiment en forme avec des sortes de malaises. ...

5 years ago I woke up and my voice was gone. This is my story. 5 years ago I woke up and my voice was gone. This is my story.

#VoiceForNora

Nora, Eagle Syndrome, Austria, February 29, 2020

Hi there! :) My name is Nora. I am secretly writing poems in Austria & I've been trying to recover from chronic pain for years. • I had a rare disease called “Eagle Syndrome” (0,16% worldwide). • ...

Doctor Nito checking his patient Doctor Nito checking his patient

Q Fever

Sam, Q fever, United Kingdom, February 29, 2020

Hi, I'm Sam, and I have chronic q fever.There are around 50 of us in the uk, and less than 5% have the chronic form like me, most have the acute form which can be treated.I caught it while working as ...

Me and ET Me and ET

Me and ET

Lynn, Essential Thrombocythemia, United Kingdom, February 29, 2020

Hi, I was Diagnosed with Essential Thrombocythemia, jak2+  on September 11th 2012 after having a few blood tests.  When I was told it was a rare type of blood cancer, like 1 in 150,000, I couldn't get...

Netherton Syndrome

Netherton Syndrome

Wendy, Netherton syndrome, United Kingdom, February 29, 2020

My son was born with Netherton Syndrome 45 years ago and apart from yearly visits to the Rare Disease Clinic at St Thomas Hospital we have never had any support from anyone.  He uses mainly Yellow Sof...

Stronger than CAH Stronger than CAH

Born Strong

Candice, Congenital adrenal hyperplasia due to 17-alpha-hydroxylase deficiency, Africa, February 29, 2020

Having been born with CAH teenage years were really hard.  I was ashamed, embarrassed and annoyed. It made me really angry.  Now in my 30s I realize it's who I am, I'll never be skinny, I'll never not...

How to live with HHT

How to live with HHT

Ted, HHT, Hereditary hemorrhagic telangiectasia, Ireland, February 29, 2020

I am 71 yrs of age, I've have HHT all of my life, my father, his three sisiters and his three brothers all had HHT. my aunt Nora bled to death with the condition in 1973, my brothers Pat and Johnny bo...

Hugo Hugo

Celebrate Rare Diseases

Christie, MECP2 Duplication Syndrome, Australia, February 29, 2020

My son, Hugo, was diagnosed with a rare genetic condition called MECP2 duplication Syndrome when he was 11 months old. This was not a diagnoses we were expecting nor did we know anything or anyone wit...

But you don’t “look” sick... But you don’t “look” sick...

I’m A Zebra

Katherine, Ehlers Danlos Syndrome, United States, February 29, 2020

Rare disease day is February 29. It’s a “rare” day dedicated to bringing information about rare diseases to light. I don’t post about it a ton on Facebook, but my girls and I have a rare disease. We h...

Rare Disease Day 2019 Rare Disease Day 2019

Bittersweet Diagnosis

Scarlett, Ehlers-Danlos syndrome, United States, February 29, 2020

It started in my back, and at first I thought that I’d just slept weird or hurt myself at cheer practice. By the time the pain began to spread, I had already been passed between pediatricians, chiropr...

Peace Peace

Surviving with multiple rare conditions

Michael, Dercum disease, Ehlers-Danlos Syndrome, MCAS, Cushing’s Syndrome, Addison’s, United States, February 29, 2020

My name is Michael and I am a multi-zebra. This is someone who suffers from mutliple rare medical conditions. Specifically, I have four (4) rare conditions with a slew of comorbidities. I may appear p...

Abby in the snow Abby in the snow

The IIH diagnosis that changed my life.

Abby, Idiopathic intracranial hypertension, Australia, February 29, 2020

I was diagnosed with Idiopathic Intracranial Hypertension (IIH) in February 2018 at age 27, after years of suffering from headaches, dizziness, fatigue, confusion/ brain fog, nausea, and many other sy...

ACEPTAR LO QUE NOS TOCA VIVIR ACEPTAR LO QUE NOS TOCA VIVIR

SIEMPRE PARA ADELANTE!!!

MANUEL, Spastic paraparesis type 2, Argentina, February 29, 2020

MI NOMBRE ES MANUEL TENGO 10 AÑOS Y SOY DE ARGENTINA.EL AÑO PASADO MIS PADRES NOTARON QUE MI MARCHA ERA LENTA,POR MOMENTOS TORPE Y ME CANSABA BASTANTE.LUEGO DE CONSULTAR CON VARIOS PROFESIONALES LLEGO...

Emma's PTC Life

Emma's PTC Life

Emma, Idiopathic intracranial hypertension, United States, February 28, 2020

Idiopathic Intracranial Hypertension is a rare disease that is classically characterized by pressure headaches, vision loss, optic nerve swelling, tinnitus, and vertigo caused by excess spinal fluid b...

Meet Me Meet Me

My PKU!

Alexia, PKU, Paraguay, February 28, 2020

My name is Alexia and I have PKU. I was diagnosed with PKU at age 3 and that in itself was difficult for me to deal with! People would ask me what I was eating and what it was and I always had a hard ...

Just because I don’t look sick, doesn’t mean I’m not. Just because I don’t look sick, doesn’t mean I’m not.

Losing Is Not Option

Stephanie, ANCA Associated with Vasculitis, PGA, Anti-neutrophil cytoplasmic antibody-associated vasculitis, United States, February 28, 2020

My name is Stephanie, I am 26 years old, I have been a healthy adult for the most part, no major illnesses except a cold here and there, my life changed forever in the beginning of December 2019, I ha...

LIVING WITH THE PAIN OF BLACK BONE DISEASE

LIVING WITH THE PAIN OF BLACK BONE DISEASE

Virginia, OHCRONOSIS, ALKAPTONURIA, United States, February 28, 2020

Imagine living with a rare genetic bone disease that has no cure, that causes excruciating and debilitating pain.  Then imagine the prescribed pain medication that effectively alleviated that pain for...

My CRPS Journey

My CRPS Journey

Jacinta, Complex regional pain syndrome, Canada, February 28, 2020

Hi, my name is Jacinta and I am writing you to educate you on a disease that until last April, I have never even heard of before.  Complex regional pain syndrome (CRPS) also known as Reflex Sympatheti...

Syngap1 one more year with severe epilepsy

Syngap1 one more year with severe epilepsy

Encarnación, Syngap1, Spain, February 28, 2020

This is Celia on her favourite bus, she is 20 years old, she suffers from Syngap1. Last year she started experiencing several types of severe epilepsy. She had to leave school; she could manage a long...

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