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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.

Stories Of The Week

My Youtube anything “Karl” was my altered person trying to bring smiles to situations at hand My Youtube anything “Karl” was my altered person trying to bring smiles to situations at hand

KEEP ON FOLLOWING YOUR TOES

Todd Sledge, Pseudomyxoma peritonei, United States, October 18, 2017

On the night of September 9th 2016, I honestly felt as if I had a stomach virus or had eaten some type of bad food product. Within the early hours of Monday morning, the 12th, I knew something was wro...

Jai. Jai.

Landau Kleffner Syndrome

Michelle Whitelaw, Landua Kleffner Syndrome, Australia, October 13, 2017

My name is Michelle Whitelaw. I am from Brisbane Australia. My 13 yr old son, Jai Whitelaw, has Landau Kleffner Syndrome with EESES and Autism. He has idopathic refractory epilepsy. He was diagnosed i...

More stories

Marilena with her collage 'I am here for you' Marilena with her collage 'I am here for you'

Rare Diseases Day changed My Life (APS-1)

Marilena, Autoimmune polyendocrine syndrome type 1, Canada, February 28, 2017

I was diagnosed with Autoimmune Polyendocrine Syndrome-Type 1 over fifty years ago and had not met anyone with this condition until two years ago. The condition mainly includes chronic mucocutaneous c...

Raising awareness and compassion for Trimethylaminuria (TMAU) Raising awareness and compassion for Trimethylaminuria (TMAU)

Raising awareness and compassion for Trimethylaminuria (TMAU)

Crissan, Severe primary trimethylaminuria, Netherlands, February 27, 2017

Hi, my name is Crissan and I want to raise awareness for a metabolic condition called Trimethylaminuria. It all started after my 18th birthday. I developed Irritable bowel Syndrome (IBS) after two rou...

Giving it all to God!!

Giving it all to God!!

Zane Beaty, (SMAS) Superior Mesenteric Artery Syndrome/Disease, United States, October 12, 2017

I was diagnosed with (SMAS) on 11/26/10 and spent three weeks in three seperate hospitals that doctors knew nothing about this rare disease.  I then underwent the Rouen-Y surgery after spending to lon...

diagnosed with common variable immune deficiency

diagnosed with common variable immune deficiency

Carmen, CVID, South Africa, February 28, 2017

I was diagnosed with cvid at the age of fourteen since then it has been a battle to get stock of intragram subcutaneous or polygam intravenous. At fourteen I spent a huge amount of my time in hospital...

My son Sam - the original Donnai - Barrow boy!

My son Sam - the original Donnai - Barrow boy!

jayne, Donnai-Barrow syndrome, United Kingdom, February 28, 2017

My son Sam was born in November 1986 with a long list of symptoms which singly weren't that unusual but had never (as far as anyone was aware) been seen all together before. These symptoms were - abse...

Fight The Itch, Save A Life

Fight The Itch, Save A Life

Lyndsey, Intrahepatic cholestasis of pregnancy, Ireland, February 28, 2017

What is ICP? Let me tell you about my little boy… In December 2013 I had a really vivid dream that I gave birth to a little boy. He was beautiful and had dark hair. It was one of those dreams that was...

Strength

Strength

Nabila, Congenital factor V deficiency, India, February 26, 2017

A blog all about raising awareness for Women with Bleeding disorders. I am a severe factor 5 Hemophiliac living in Ahmedabad, Gujarat, India and this is a blog about my life! I Nabila Husseni, female,...

DRESS Syndrome: Preparing to Die.

DRESS Syndrome: Preparing to Die.

Brittani, DRESS syndrome, United States, February 24, 2017

There's a humbling chill in learning there isn't anything doctors can do to prolong the great inevitable. To date, it's the hardest thing I've ever survived. Existing with knowing I'm on borrowed time...

1 in a million!

1 in a million!

Fiona, Ollier disease, United Kingdom, February 24, 2017

I'm Fiona - i'm 27 years old and was diagnosed with an extremely rare bone disorder when I was 7 months old. It is called Ollier's Disease and Maffucci Syndrome. It affects 1 in a million people (actu...

My eleven years with NETS.

My eleven years with NETS.

Andy, Pancreatic neuroendocrine tumor, United Kingdom, May 28, 2017

My time associated to NETS The below story is my eleven years in full. This should hopefully explain the highs and lows during my time with NETS and the value of PRRT TREATMENT. Hello, Ladies and Gent...

Neuromielitis optica o enfermedad de Devic

Neuromielitis optica o enfermedad de Devic

Diana Lopez Medina, Neuromyelitis optica, Mexico, March 1, 2017

2007: Fue muy triste estar en el hospital por un mes y que después del tratamiento no hubiera resultados, al final los médicos diagnosticaron Sidrome de devic y posiblemente no volvería a caminar. Est...

Our journey

Our journey

Vickey, Alternating hemiplegia of childhood, United Kingdom, February 28, 2017

Guest Article: Alternating Hemiplegia of Childhood For Rare Disease Day (28-Feb-2017), I have invited a family friend to write about her experiences of AHC, a rare neurological condition affecting 1 i...

With Faith Come Hope!

With Faith Come Hope!

Rachele, Infantile neuroaxonal dystrophy, United States, February 28, 2017

Our family joke was always "if we didn't have bad luck, we wouldn't have any luck at all." We would all laugh at that statement until one day that cruel joke hit my happy almost 2-year-old Zach. You s...

Stephen's Hirschsprung's Journey

Stephen's Hirschsprung's Journey

Lisa, Hirschsprung disease, United Kingdom, February 27, 2017

Hirschsprung's disease! Heard of it? No neither had we until our son was diagnosed with it. It is a rare condition that affects 1 in 5000 babies. Part or all of the large colon has no nerve cells in w...

Neurofibromatosis: my diagnosis, not my definition

Neurofibromatosis: my diagnosis, not my definition

Jesse, Neurofibromatosis type 1, United States, February 27, 2017

When Jesse was born, we did not know of the challenges he would face in his life. By the time he was 3 months old, brown, birthmark-type patches began to form on his otherwise perfect skin. His pediat...

Josie's story-ARSACS

Josie's story-ARSACS

Tracy, Autosomal recessive spastic ataxia of Charlevoix-Saguenay, United States, February 27, 2017

At the age of 5 we discovered that there was something different about the way Josie would walk or how she annunciated her words. Teachers began calling saying she would go to stand from her desk &amp...

Being a Rarity among Raes

Being a Rarity among Raes

Alexandra Sloan, Abetalipoproteinemia, United States, February 27, 2017

I am a 33-year-old woman with a disease only 100 people have worldwide, I also have a disease that only has around 30,000 people affected. Abetalipoproteinemia is the first - I do not absorb fat or fa...

My Ledderhose/Dupuytren's Disease Story

My Ledderhose/Dupuytren's Disease Story

Brenda, Ledderhose disease, United States, February 27, 2017

MY STORY: In light of Rare Disease Month, I wanted to share my story with many of you that do not know it. I was diagnosed in 2012 with Ledderhose Disease. This disease is a close kin to Dupuytren's D...

IPF (Idiopathic Pulmonary Fibrosis)

IPF (Idiopathic Pulmonary Fibrosis)

Colleen, Idiopathic pulmonary fibrosis, United States, February 27, 2017

My name is Colleen and I'm 53 and reside in Michigan. In early 2016, I was having difficulty breathing and new I had to get in for a physical, but it was my daughters graduation from high school and w...

Policondritis Recidivante/Relapsing Polychondritis

Policondritis Recidivante/Relapsing Polychondritis

Carlos Román, Relapsing polychondritis, Mexico, February 27, 2017

La Policondritis Recidivante es una rara enfermedad autoinmune que afecta no solamente a las estructuras de los cartílagos, si no también a cualquier sistema del organismo. Esta rara enfermedad frecue...

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