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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.
Littoral Cell Angioma

Littoral Cell Angioma

Barbara, Australia, December 27, 2014

My story is not about a disease with suffering and pain like so many I found on this site. My story is about living with an extremely rare kind of tumour in the spleen: Littoral Cell Angioma . At t...

TARLOV CYST/TETHERED CORD

TARLOV CYST/TETHERED CORD

BARBARA, United States, December 26, 2014

I WAS BORN WITH TETHERED CORD AND WAS NEVER DIAGNOSED, TARLOV CYST IS PRESENT OR FOLLOWERS THIS DIEASE FOR SOME REASON. MINE STARTED WITH BOWEL PROBLEM AS A CHILD, DEALF IN MY RIGHT EAR THAT NO REASON...

My life with Sarcoidosis and what it has done to me!

My life with Sarcoidosis and what it has done to me!

Frank, United States, December 21, 2014

My Sarcoidosis story: Hello my name is Frank Rivera. I am 47 . My story actually goes back to 2004. While in Florida I was found to have a lump in my lungs. After a biopsy they told me I had lung c...

Rare disease-a tragic reality in India

Rare disease-a tragic reality in India

Payel, India, December 17, 2014

The World out of sync with the obscure and abstruse reality fails to grasp and shrugs at the apocryphal term VHL or von-Hippel Lindau, an affliction I’m combating with to the hilt. The urbanised an...

Central Pain Syndrome: Pain from my brain‏

Central Pain Syndrome: Pain from my brain‏

Patti, United States, December 17, 2014

I live with an incurable, torturous & poorly understood pain known as central pain syndrome, CPS. CPS is caused from damage to the central nervous system, a pain which makes the simplest, most basi...

spcd

spcd

Nikki, United States, December 16, 2014

My daughter is diagnosed with a rare metabolic disorder spcd (systematic primary carnitine deficiency) she almost died at the age of 14 months due to a dramatic drop in blood sugar (hypoglycemia) she ...

Fighting H.A.R.D.

Fighting H.A.R.D.

Allie, United States, December 12, 2014

I am Allie, and I am starting an organization for other kids like me who have rare diseases. We are raising money and awareness by using facebook, youcaring, and having contests to do this. I am 12 ye...

Estou doente e cansada de estar doente e cansada

Estou doente e cansada de estar doente e cansada

Alexandra, Portugal, December 10, 2014

Viva, O meu nome é Alexandra Manata, tenho 44 anos, resido em Ermesinde, casada e tenho um filho de 11 anos. Sou licenciada em Ciências Históricas e Pós-Graduação em Ciências Documentais e trabalho c...

Morvan's Syndrome

Morvan's Syndrome

Christine, United States, December 9, 2014

My name is Christine & I am writing this in regards my to son, Justin. We reside in Lake Stevens, WA. On March 30, 2010, when Justin was just 22 years old, out of nowhere he started having weakness in...

Visual Snow

Visual Snow

Melina, United States, December 6, 2014

Hi, my name is Melina and im 13 and have a rare disease called visual snow. It all started about lets say 2yrs ago, i was at my aunts house and started to see thousands of little dots in my eyes (that...

Visual Snow: My Story

Visual Snow: My Story

Jackie, United States, December 3, 2014

Visual Snow: My Story Posted on June 25, 2014 by Jackie This article is intended to spread awareness about a rare condition called Visual Snow. It is something doctors do not understand… and many do...

Wegener's

Wegener's

Sarah, United States, December 2, 2014

I was diagnosed with Wegener's in June 2009 at the age of 61. I was working toward retirement and enjoying the rest of my life. I had always had sinus problems and severe pain in my legs and arms. I g...

Your battle is my battle

Your battle is my battle

cierra, United States, November 20, 2014

In 2010 I gave birth to a beautiful baby girl but what I didn't realize is just how much my life would change. When you have a child you know that things can go wrong you read other people's stories y...

Auf dem Weg ins normale Leben

Auf dem Weg ins normale Leben

Angela, Austria, November 20, 2014

Meine "Geschichte" ist auf meiner Website zu finden. Unter www.lebenskuenstlerin.at/aufdemweginsnormaleleben.html ist ein Blog, der einen Einblick gibt in mein Leben mit dem Wilkie-Syndrom.

Why I fight through the pain, depression & anxiety, as well as stomach cramps

Why I fight through the pain, depression & anxiety, as well as stomach cramps

David, United States, August 27, 2014

I have fought for so long that I have forgot what not having to fight feels like. Don't misunderstand, I fight this disease for a beautiful purpose, my son. After so many years of pain, depression, an...

No cure

No cure

jamie, United States, August 15, 2014

In April of 2010 I went to the hospital because I had a cramp in my right calf. When they did un ultra sound they found a clot. After a week in the hospital I found out that I had a protein C & S defi...

Cushing's Syndrome

Cushing's Syndrome

Victoria, United States, June 8, 2014

Hi My name is Victoria,I'm 39 and I have Cushing's Syndrome. Cushing's Syndrome is when your body has excessive levels of cortisol for a long period of time. I had many symptoms with my Cushing's: hig...

sydrome de williams

sydrome de williams

mokhtari, France, March 27, 2014

Meriem est atteinte du syndrome de williams mon combat contre la maladie se déroule tranquillement sans aucune complication physique je l'ai toujours stimulé afin qu'elle progresse le mieux possible e...

Drowning On land: Living With Interstitial Lung Disease

Drowning On land: Living With Interstitial Lung Disease

Paul, United States, March 7, 2014

Hi, I'm Paul Brighton from Litchfield CT. In April of 2013, I fell Ill with pneumonia. It took four moths and a lung biopsy to discover I had (non-smoker) Interstitial lung disease, a rare disease tha...

living with hydrocephalus schizencephaly and epilepsy

living with hydrocephalus schizencephaly and epilepsy

claire, United Kingdom, March 5, 2014

Hi my name is claire I have a daughter who is 3 yrs old she has hydrocephalus schizencephaly and epilepsy I have known she had problems from pregnancy n throughout the odds she battled through it and ...

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