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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 hidden disease

the hidden disease

David, Behçet disease, United Kingdom, February 7, 2014

I was unaware of my Behçet’s and had accepted constant illness was simply my lot in life. The GPs were useless with comments like "you need to snap out of this malaise" or "you have a chronic pain syn...

TERRIBLE VALENTINE'S DAY PRESENT

TERRIBLE VALENTINE'S DAY PRESENT

DENISE, United States, February 7, 2014

MY HUSBAND AND I WERE SO EXCITED TO BE GOING ON OUR VERY FIRST CRUISE FOR VALENTINE'S DAY 14 YEARS AGO. WHILE GETTING SUIT CASES PACKED AND GETTING SHOWERED I HAD A BOLT OF PAIN ON THE RIGHT SIDE OF M...

I had know idea!

I had know idea!

lucy, United States, February 7, 2014

Lucy had suffered with sinus infections and profound fatigue for over 18 months, multiple courses of antibiotics with small little breaks in feeling sick. She became very ill with severe facial pain, ...

"My Roller Coster Ride though Mito"

"My Roller Coster Ride though Mito"

Rachael, United States, February 7, 2014

For most people riding roller coasters are fun, but when you have mito it's a challenge. At age 16, I started my journey. I was scared. I had no idea what mito was. I had test after test, and what I t...

Team CMT

Team CMT

Chris, United States, February 7, 2014

I have CHarcot Marie Tooth, an inherited never disorder. When I was diagnosed I did not think it was right that no one had ever heard of CMT. I also realized how lucky I was to be running. So I decide...

My Dandy-Lion

My Dandy-Lion

Sherri, United States, February 7, 2014

My daughter is the sunshine to my everyday. She was diagnosed at 25 wks gestation with Dandy Walker Syndrome. The doctors said she may or may not be compatible with life. They also said there was 100%...

A rogue gene!

A rogue gene!

Emily, United Kingdom, February 7, 2014

I first went to my GP around 4-5 years ago about issues I was having walking upstairs, I also had lost the ability to stand on tip toes and run. Basically he asked me if there was any history of MS or...

Kallmann Syndrome - Failure to start puberty.

Kallmann Syndrome - Failure to start puberty.

Neil, United Kingdom, February 6, 2014

Hello, I have a rare condition called Kallmann Syndrome, also known as congenital hypogonadotropic hypogonadism (CHH). The primary symptom is a failure to start puberty due to a break down in th...

One in a Million Odds: Living with Stiff Person Syndrome

One in a Million Odds: Living with Stiff Person Syndrome

Jillian, United States, February 6, 2014

Just over four years ago, I was diagnosed with a rare neuromuscular disease. In truth, it took a frustratingly-long eleven years of research, progressing symptoms, and going from doctor to doctor in o...

My Journey

My Journey

Hiliary, United States, February 4, 2014

I was 19 years old when I was diagnosed on June 26, 2010. It all started with a case of cellulitis to my foot. When that didn't get any better I went up to Rush Copley and was diagnosed with rheumatoi...

Camurati-Engelmann's Disease

Camurati-Engelmann's Disease

Kay, United States, January 31, 2014

It sometimes takes years to get a diagnosis if you have a rare disease. I went through years of being told I was just a worried mother before my son was finally diagnosed with Camurati-Engelmann's. I ...

Susacs Syndrome

Susacs Syndrome

Howard, United States, January 31, 2014

Hi, My wife is 54 years old and was recently diagnosed with a very rare Auto-immune disease called Susac's Disease. She has been hospitalized for a total of 6 weeks in the last nine weeks. She has wha...

Narcolepsy with Cataplexy

Narcolepsy with Cataplexy

Laura, Australia, January 30, 2014

I am 21years old, and it took roughly five years to diagnose my condition. I suffer from extreme bouts of sleepiness throughout the day falling asleep whilst shopping, walking, gardening and watching ...

Susac's Syndrome

Susac's Syndrome

Nancy, United States, January 30, 2014

I have a rare auto-immune disease that has been diagnosed in about 400 people worldwide. I lost some vision, hearing and had horrible migraines. I know others who suffer with encephalopathy (brain les...

Jennifer's Story

Jennifer's Story

Jennifer, United States, January 29, 2014

Jennifer's Story Jennifer Polycystic Kidney Story… My name is Jennifer Pickard. I am a 35 year old wife, mother, and daughter. I am going to tell you my story from the beginning, and tell you where ...

A Lifetime of Illness Before a PIDD Diagnosis

A Lifetime of Illness Before a PIDD Diagnosis

Suzanne, United States, January 29, 2014

I'm now 66 years old, which I'm told is somewhat of a minor miracle considering what I have. Born in 1947 as a 4 lb. premie, I was sent home to die. Nobody told me that, so I continued to live a life ...

Mal de Debarqument Syndrome

Mal de Debarqument Syndrome

Diane, United States, January 28, 2014

l have MdDs as its know, there is no cure and mostly women get In 2012 l went on a crusie to Norway to see if l liked crusing before doing a long haul, l had a wonderful time and when l arrived home ...

История одной болячки

История одной болячки

Inter-regional public non-profit charity organization of patients «Velikan», Russian Federation, January 28, 2014

История №3 Рассказывает мама о сыне с диагнозом акромегалия Как это начиналось? Мы не виделись с ним около года, и я была поражена тем, какой мой сын стал «качок». Ему тогда было 25 лет: широченные пл...

what is klippel feil syndrome and why is it so rare

what is klippel feil syndrome and why is it so rare

natalie, United Kingdom, January 28, 2014

My name is Natalie i am 32 & i got diagnosed 3yrs ago with klippel feil syndrom & because it's so rare it's hard to understand i have got 2 boys who i had to explain my diagnosis to which was hard bec...

Wegener's Granulomatosis _ Melbourne

Wegener's Granulomatosis _ Melbourne

Freda, Australia, January 27, 2014

My name is Freda and l have a rare medical condition called Wegener's Granulomatosis / Micro Polyangitis also Von Willebrand's Disorder all these disorders are very rare and l have no contact with any...

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