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.
The Walking Dead.

The Walking Dead.

Tyrone, Undiagnosed, United States, February 11, 2019

I have been living with a fecal odor for over 10 years now. I have tried everything to fight against the odor to no avail. I'm constantly harassed, teased by people and it hurts so deeply. There is no...

Living with Alopecia: It’s More Than Just Hair Loss

Living with Alopecia: It’s More Than Just Hair Loss

frankie, Alopecia, United Kingdom, February 11, 2019

Alopecia is something that I did not expect to get in my life. It is a condition that I knew others had, but as with any illness, we just don’t ever see ourselves contracting it. I was in a state of s...

The Journey of Champ1 mutation

The Journey of Champ1 mutation

Lisa smith, champ1 mutation, United States, February 11, 2019

My beautiful daughter Breanna is 20 years old in March and functions around the age of a 4 year old. She loves people and is very social but there are alot of times severe behaviors get in her way..We...

Anna Rose Anna Rose

My Itchy Miracle Baby

Jenny, Intrahepatic cholestasis of pregnancy, United States, February 11, 2019

This is my journey with cholestasis. To begin my story, I would like to give the background of my already high-risk pregnancy. My husband and I were married in January of 2017. We were both single par...

Living life "seeing"

Living life "seeing"

Abel Markham, X-linked retinoschisis, United States, February 10, 2019

In Decemeber 2017 my son Abel was diagonsed with x-linked retionschisis at the age of 4. Having no idea what this disease was and no idea how I became a carrier I broke down. We later found out that m...

Historia de Esteban Historia de Esteban

Historia de Esteban

Esteban, Hemophilia A, Mexico, February 9, 2019

Al principio puede ser difícil enterarte que tu hijo padece una enfermedad que ni siquiera conoces, pero hay que tener paciencia y confianza en que la ciencia sigue avanzando. Son los consejos que nos...

PEDIACLINIC - Historia de Ana Sofía PEDIACLINIC - Historia de Ana Sofía

PEDIACLINIC - Historia de Ana Sofía

Ana Sofía, Trichothiodystrophy, Mexico, February 9, 2019

Cuando la intuición de madre te dice que algo no va bien, no te cierres, investiga y pide ayuda. Eso es lo que nos invita a hacer Ana Salido, la mamá de una pequeña con tricotiodistrofia, que paciente...

Historia de Diego - Parte 2 Historia de Diego - Parte 2

Historia de Diego - Parte 2

Diego, Progressive myoclonic epilepsy, Mexico, February 9, 2019

Una vez determinado el padecimiento de Diego ha sido más fácil determinar cómo tratarlo. ¡Queremos que así sea con todas las enfermedades raras! #ShowYourRare#DíaDeLasEnfermedadesRaras

Historia de Diego - Parte 1 Historia de Diego - Parte 1

Historia de Diego - Parte 1

Diego, Progressive myoclonic epilepsy, Mexico, February 9, 2019

Conoce cómo fue el proceso que vivió Diego y su familia para descubrir su diagnóstico. Un camino largo pero no imposible.   

PEDIACLINIC - Jose Alan's Story 3 PEDIACLINIC - Jose Alan's Story 3

PEDIACLINIC - Jose Alan's Story 3

José Alán, GNB1, Mexico, February 9, 2019

 After the diagnosis Jose Alan and his mom faced new challenges. They are an example of perseverance. Know their story! 

PEDIACLINIC - Jose Alan's Story 2 PEDIACLINIC - Jose Alan's Story 2

PEDIACLINIC - Jose Alan's Story 2

José Alan, GNB1, Mexico, February 9, 2019

  Thanks to an online community, Paola found parents of other children with the same condition of her son. They helped her to get through this situation with serenity and faith. 

PEDIACLINIC - Jose Alan's Story PEDIACLINIC - Jose Alan's Story

PEDIACLINIC - Jose Alan's Story

José Alán, GNB1, Mexico, February 9, 2019

 Meet José Alán, a little boy who joins the Rare Disease Day to raise awareness about these diseases. 

PEDIACLINIC - Ivanna's Story PEDIACLINIC - Ivanna's Story

PEDIACLINIC - Ivanna's Story

Ivanna, Pelizaeus-Merzbacher-like, Mexico, February 9, 2019

Meet Ivanna, a little girl who has been diagnosted with a rare disease called Pelizaeus Merzbacher-Like. Ivanna and her mom want to share their story to help all the people who are going through the s...

Un Guerrero Un Guerrero

Soy un Guerrero

Carlos Blanch, Congenital myasthenic syndrome, Peru, February 9, 2019

Hola, tengo sindrome de miastenia congenita. Actualmente tengo 43 años, me diagnosticaron simplemente miastenia a los 6 años, pero a los 32 me dieron mi diagnostico completo. Esto no ha impedido que h...

This is Millie... This is Millie...

CSID (Congenital Sucrase - Isomaltase Deficiency)... the battle to diagnose a rare disease.

Sarah, Congenital sucrase - Iiomaltase deficiency, United Kingdom, February 8, 2019

This is Millie, this is our story.This little girl is 3 and has been very poorly since she was born. She has just been diagnosed with a rare disease called CSID (Congenital sucrase-isomaltase deficien...

Living with dystonia

Living with dystonia

Rebecca, Myoclonus-dystonia syndrome, United Kingdom, February 8, 2019

Hi I’m Rebecca and I’m 21 years old. When I was diagnosed with dystonia I thought it would make my life better. But the truth was that it only made it seem more real. The words no cure hurt a lot at t...

Together we can everything Together we can everything

Show your care, show your rare

Irina, Mucopolysaccharidosis typeI., Russian Federation, February 7, 2019

My marvelous son Arseniy. He is 10 years old now. Diagnosed at the age of 9 months. Began our treatment at the age of 3.We paint our faces with the Rare Disease Day logo colours to show our support fo...

Be proud of who you are Be proud of who you are

what Is rare for me

Brittney, Ehlers Danlos, vascular type, United States, February 7, 2019

I suffer from vascular Ehlers Danlos syndrome and idiopathic intracranial hypertension 2 rare issues that are a daily struggle. One will in time take my vision , and one day by day is literally damag...

VLACD

VLACD

myriam, VLCAD deficiency, Argentina, February 7, 2019

Hola soy de Tucuman Argentina mi hija tiene 6 años y hace 2 años y medio le detectaron vlcad somos 6 casos en la Argentina.... se le despertó tarde su enfermedad es la única de todos los niños que con...

Guided by God, Determined, & Courageous, Guided by God, Determined, & Courageous,

BabyBane vs. BrainStorm

Emmanuel, Malignant migrating partial epilepsy of infancy, United States, February 6, 2019

I was born during the August 21st, 2017 Great Solar Eclipse that traveled across the USA. My uncle nick named me BabyBane because of Bane in the movie The Dark Knight Rises. During the sewer fight Ban...

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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.