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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.
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 ...

Living with Cushing's Syndrome

Living with Cushing's Syndrome

Maria, United States, January 7, 2015

Hello, My name is Maria, I am 32 years old , I have Cushing's Syndrome and this is my story. I am from Bogota, Colombia, yep! The land of good coffee! But I have made of Portland, Oregon, my home. ...

Years of Misdiagnosis Compels Me to Advocate for Rare Disease Patients & Awareness

Years of Misdiagnosis Compels Me to Advocate for Rare Disease Patients & Awareness

Kimberly, United States, January 2, 2015

Hello! My name is Kimberly and I was diagnosed with GIST Sarcoma (gastrointestinal stromal tumor) in December of 2012 and Papillary Thyroid Carcinoma with a rare, columnar cell variant four months lat...

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...

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