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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.
I am PSPD

I am PSPD

Kari, United States, January 31, 2015

My daughter and I were both diagnosed with Platelet Storage Pool Defect in 2011, a life threatening bleeding disorder. Ever since our diagnosis, we've been fighting to keep her safe and injury free, a...

Idiopathic Subglottic Stenosis

Idiopathic Subglottic Stenosis

Pam, United States, January 31, 2015

I have idiopathic subglottic stenosis. At 18 years of age, I began to have shortness of breath. I was diagnosed with asthma and treated for asthma without much relief. 15 years later, It had gotten so...

Living Through Narcolepsy with Cataplexy

Living Through Narcolepsy with Cataplexy

Tera, United States, January 31, 2015

I've always been a sleeper right from birth. My twin sister & I slept a lot as babies which made it easy for her. We were born severely anemic & nearly died at birth. Sleep was my friend. So, it took ...

all  about me

all about me

abigail, United Kingdom, January 30, 2015

my name is Please help us welcome Abigail K. is 20 years old. She was was diagnosed with chromosome 12 deletion and a learning disabilities. She has Perthes disease in her left hip, a leg length discr...

My daughter has Nijmegen Breakage Syndrome

My daughter has Nijmegen Breakage Syndrome

Janette, United Kingdom, January 30, 2015

When my daughter was 7yrs old a lump appeared near her anus. It was very painful for her and the first diagnosis was a boil. I knew inside that this wasn't right. I took Emma back to the hospital as s...

FMF- Nightmare to Survival

FMF- Nightmare to Survival

Sam, United States, January 29, 2015

Being diagnosed was just the beginning of the most painful event and roller coaster in my life. As a child I suffered from chronic fevers and abdominal problems always with pain. Suddenly after becomi...

To hell an back and back to hell

To hell an back and back to hell

david, Australia, January 28, 2015

I am a 67 year old male born in Scotland, who has lived with back problems since 1973, mid 1986 while holidaying in Oregon I went white water rafting on the Rogue River on an inner tube, unfortunately...

Finding Hope and Regaining Power After Diagnosis

Finding Hope and Regaining Power After Diagnosis

Melanee, United States, January 27, 2015

I went to the ER complaining of chest pains and an hour later a doctor came to me and said "The CT scan revealed you have thin-walled cysts in all lobes of your lungs. We think you have a rare, progre...

The Face of IIH

The Face of IIH

Amanda, United States, January 23, 2015

I was having headaches pretty much 24/7. I went to the eye dr one day to get new glasses. I ended up spending hours there that day, and then being sent to a specialist a few hours away later that even...

Fish odor syndrome-tmau

Fish odor syndrome-tmau

shaz, United Kingdom, January 22, 2015

I suffer a rare disease called tmau fish odor syndrome. Trimethylaminuria is an uncommon genetic disorder that causes a strong body odour usually described as like rotting fish, faeces or garbage. The...

Adaptandose a una enfermedad y a la indiferencia.

Adaptandose a una enfermedad y a la indiferencia.

kobalu, Mexico, January 20, 2015

Hace siete años me diagnosticaron Miastenia Gravis Ocular, poco a poco voy aceptando la enfermedad, con el tiempo me he ido adaptando a ella junto con los dolores que trae consigo como son dolor de ca...

Under 30 with 5 chronic illnesses

Under 30 with 5 chronic illnesses

Marry-Anne, Australia, January 18, 2015

I am 28 years old and I have five different chronic illnesses, of which one is still pending diagnosis. Two of my illnesses are rare. Tietze's syndrome and Idiopathic Intracranial Hypertension (IIH) h...

Avascular Necrosis

Avascular Necrosis

Diane Olson, United States, January 17, 2015

I was diagnosed Nov 5 2013, with Avascular Necrosis. Total knee replacement at the at of 43. This disease cuts off the blood flow to the bones witch in turn slowing start to dye. I have other joints ...

Sam vs VWM: Living with a rare, terminal disease

Sam vs VWM: Living with a rare, terminal disease

Allyson, United States, January 15, 2015

Before February 2013, Sam was a normal, healthy kid. He was a little clumsy, but nothing that we were concerned about. One day in February, Sam was playing on the bed, when he fell off onto the carpet...

For the Love of Lucia

For the Love of Lucia

Lisa, United States, January 13, 2015

Russell and Lisa Ferlita gave birth to their first child, Vincent in February , 2011. At birth it was evident that he had something wrong with his muscles. After extensive genetic testing and care he ...

Living with Tuberous Sclerosis.

Living with Tuberous Sclerosis.

Kate, United Kingdom, January 10, 2015

My wonderful daughter, a talented artist, photographer, was born with TS. Her life as a child was not easy, she was bullied at school, has had no self esteem with respect to relationships and her marr...

G.A.N.s

G.A.N.s

naomi, Australia, January 10, 2015

My 6 year old daughter Josephine has Giant Axonal Neuropathy , the only case in australia and there are only 43 to 44 cases around the world !!! .

My beautiful children

My beautiful children

Robyn, Australia, January 8, 2015

My beautiful son was born with multiple hereditary extososes. His sister was his guiding light and supporter through his young life of surgery. Her crushing diagnoses of glioblastoma (brain cancer) at...

Misdiagnosed as hypochondriac!

Misdiagnosed as hypochondriac!

Dee, United Kingdom, January 8, 2015

Hi there, my name is Dee and I live in Somerset, UK. For as far back as I can remember I have been ill in one way or another - mostly constant infections requiring antibiotic treatment in large and co...

My Intrahepatic Cholestasis of Pregnancy (ICP) Story

My Intrahepatic Cholestasis of Pregnancy (ICP) Story

Raven, United States, January 7, 2015

When the word “Pregnant” showed up on my ClearBlue pregnancy test one afternoon in January, I just about flipped my lid. We hadn't planned for this, my husband and I both agreed we weren't ready, and ...

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