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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.
Invisible Disease

Invisible Disease

Jessica, United States, February 6, 2015

At 16, I almost died due to hundreds of P.E.'s surrounding both my lungs & from a major DVT in my left leg. Three days after I turned 17 (3.5 weeks later), I was able to go home. I was later given the...

06.02.2015 Yes I am still alive ,today is my Birthday

06.02.2015 Yes I am still alive ,today is my Birthday

Gjurgica, FYROM, February 6, 2015

Today is my 36th birthday. Three years ago, I was diagnosed with a rare disease – “Pulmonary Hypertension”. When this happened, I didn’t believe that I would ever turn 36 and that I would overcome the...

A girl living in a "cushie" world

A girl living in a "cushie" world

Rachel, United States, February 5, 2015

In October 2008, I was diagnosed with Cushing's Disease, a rarely diagnosed endocrine disorder involving a hormone-secreting tumor of the pituitary gland. I'd been sick for years by the time I got dia...

Alone and depressed

Alone and depressed

David, United Kingdom, February 5, 2015

I suffer from achalasia these past 5 years and it has stolen my life. I cant eat meals now only soft blended watery foods not all foods as it sit in .y esophagus for ages. I get dehydrated alot now an...

Line's Dream

Line's Dream

Yallaoui, Algeria, February 5, 2015

Hello My Name is Line I'm 8 years old and I have RTS (Rubinstein-Taybi Syndrome) . I was diagnosed with RTS when I was 4 years old ,I think I'm a unique case in Algeria . Rubinstein-Taybi syndrome is ...

Life can win

Life can win

Natalia, Bulgaria, February 4, 2015

Life can win The disease came upon me quickly and unexpectedly. Like a storm with no warning. Within a month, after a cold, I started to have breathing problems and I couldn’t walk more than 150-20...

Thank GOD I'm NOT Alone.

Thank GOD I'm NOT Alone.

anthony, United States, February 3, 2015

In March 2009, I was diagnosed with F.A.P/Gardners Syndrome. On Sept 10, 2009, I had my entire colon removed along with the majority of my rectum. Three years later, as a result of this surgery, I dev...

Carnitine-acylcarnitine translocase deficiency (CACT)

Carnitine-acylcarnitine translocase deficiency (CACT)

Amy & Max, United States, February 3, 2015

Our son, Gage, was born on July 10th, 2008. Gage has been diagnosed with a rare genetic disorder called Carnitine-acylcarnitine translocase deficiency (CACT), which prevents the body from converting f...

LEI...PSP

LEI...PSP

valentina, Italy, February 3, 2015

LEI ... PSP Prima di conoscere Lei si vive nelle normali abitudini con normali equilibri con una normale serenità. Ora che si comincia a fare i conti con Lei si vive cambiando le abitudini ...

The Name Of It All

The Name Of It All

Kasia, United States, February 3, 2015

I have had bad joints since I was born; when I was younger I was constantly complainging of my joints hurting and with sprains. Come around to Middle School and suddenly I had scolosis. High School ca...

What I’ve Learned From Having a Child With a Rare Terminal Disease

What I’ve Learned From Having a Child With a Rare Terminal Disease

Allyson, United States, February 3, 2015

Almost two years ago we sat in a neurologists office and were told our 2-year-old son had an incurable, untreatable, terminal brain disease. Vanishing White Matter Disease, a form of Leukodystrophy. I...

Mesothelioma the Asbestos Cancer

Mesothelioma the Asbestos Cancer

mavis, United Kingdom, February 3, 2015

I’m just an ordinary woman who married at 18 and washed my husband’s clothes as he came home from work at the Chatham Dockyard as a Shipwright. I didn’t know the powder on Ray’s clothes was anything o...

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 ...

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