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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.
The Narcoleptic Nurse

The Narcoleptic Nurse

Kristi, United States, February 3, 2015

To say I had an interesting journey through nursing school would be an understatement. When I started college in 2009, I never expected that I would be in a position where my own mind and body worked ...

Why Me Lord?

Why Me Lord?

Maria, United States, February 2, 2015

My name is Maria Teniente. At 58 years old, I was living my dream life. I was retired from education after 28 yrs of service and I had became the National Director of Training and Development for a na...

Boy to a Disabled "young man"

Boy to a Disabled "young man"

Azeem, Pakistan, February 2, 2015

People usually describe childhood as the most entertaing days of anyonne's life....but it wasn't really true for me. Born as a young 'healthy' boy,my parents as anyone else were dreaming for my bright...

Vitiligo Patient Surgeo Bell

Vitiligo Patient Surgeo Bell

Surgeo, United States, February 2, 2015

As a child, I always had a small white patch on the left side of my eye that I just assumed it was a birth mark. It never spread and it wasn't bothersome, so I never worried much about it. My mom even...

Wake-me-up challenge  -the story of my narcolepsy

Wake-me-up challenge -the story of my narcolepsy

Agnieszka, Poland, February 1, 2015

I was on a camp, deep, deep in the forest with friends when I realised that in some special moments my knees started to live their own life. In fact, when I was walking and talking or walking and laug...

The Disguised Monster Within

The Disguised Monster Within

Vanessa, United States, February 1, 2015

After struggling many years with an unknown autoimmune disease, tons of misdiagnosis, and thousands of dollars spent on treating symptoms, I was finally diagnosed with PBC (Primary Biliary Cirrhosis) ...

Living with Idiopathic Subglottic Stenosis

Living with Idiopathic Subglottic Stenosis

Brenda, United States, January 31, 2015

After years of being short of breath and being misdiagnosed as has having asthma, I learned I had Subglottic stenosis. It is a narrowing of the windpipe below my vocal cords. I had 3 tracheal dilation...

THROUGH A LABYRINTH OF CONCRETE (Do Not Give UP)

THROUGH A LABYRINTH OF CONCRETE (Do Not Give UP)

Vitaliy, Ukraine, January 31, 2015

Story by Max Beskorovaynyiy. Translation by ABBYY Lenguage service © Children with Spinal Muscular Atrophy, CSMA. THROUGH A LABYRINTH OF CONCRETE (Do Not Give UP) This story began in Kharkiv back ...

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...

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