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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.
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...

Our Little Man and FPIES

Our Little Man and FPIES

Joy, United States, January 26, 2014

Samuel was diagnosed with FPIES at 11monthes; although he had chronic illness for months prior to the diagnosis. Samuel is our 4th child, 2 of our other boys had milk protein intolerances so when Samu...

Georgie Pie's Brighter Future

Georgie Pie's Brighter Future

Katie, United Kingdom, January 25, 2014

We spend most days praying, fundraising and hoping for a brighter future for our beautiful daughter Georgia. Georgia is three years old and just four months ago was diagnosed with a devastating neu...

Primary immune deficiency disease

Primary immune deficiency disease

Joanna, United States, January 25, 2014

I was born in 1972 with a primary immune deficiency called hypogammaglobulinemia which is a deficiency of the main antibody defense against bacteria. No one knew at the time of my birth. I was a norma...

Amanda's Story

Amanda's Story

Geraldine, United States, January 25, 2014

Amanda was born a normal beautiful baby girl weighing in a 6 pounds 8 1/2 ounces and 19 inches long in 1985. She progressed normally until age 15 months when something went terribly wrong. After a ver...

Symptomatic Tarlov Cyst

Symptomatic Tarlov Cyst

Nicci, Canada, January 25, 2014

Classified as a rare disease sufferers like myself are entirely frustrating by the lack of knowledge on this issue we fight against GP who scoff at us dont believe us and the pain clinics who want to ...

Cure for uncommon autoimmune disease

Cure for uncommon autoimmune disease

Elaine, Malaysia, January 25, 2014

Symptoms: swollen and crack lips, mucous membranes ulcers(oral and virginal), swollen legs, weak joints Started: 1-jan-2012 It was started with an insect bite-like mark on my right shin. As days p...

Living with Jarcho Levin Syndrome

Living with Jarcho Levin Syndrome

Roberto, United States, January 24, 2014

Living with Jarcho-Levin syndrome This is the story of Roberto "Papo" Lugo born August 21,1992 . My son Roberto just celebrated his 1 9th birthday this August 2011.We thank our mighty and awesome ...

In Spanish: malformación de Chiari

In Spanish: malformación de Chiari

Marta, Spain, January 22, 2014

Buenos días: Me presento mi nombre es Marta Fdez. De Gamboa soy la presidenta de la Asociación Nacional Amigos de Arnold Chiari. Cree en el 2003 esta asociación para ayudar  a más afectados. Poder i ...

Kicking SPS - Fight On !!!

Kicking SPS - Fight On !!!

Shane, Australia, January 22, 2014

I have Stiff-Person Syndrome (SPS), a rare neurological disorder affecting about one in a million people. In 2006, I discovered I had a broken back, the cause a mystery. At the same time, I suddenly w...

Starrla

Starrla

Starrla, United States, January 21, 2014

Hello my name Is Starrla, what I will do for rare disease day is advocate for people affected by a rare disease. I hope that we can get better care for all whom struggle with a rare disease. In 2011 I...

Osteopetrosis

Osteopetrosis

Paula, Portugal, January 20, 2014

I want to say more about Osteopetrose - this is the result of the genetic study of my son "Molecular study of CLCN7 gene (performed in Service Biochimie et Biologie of moléculaire, Lariboisière Hopita...

Cleft Hands

Cleft Hands

Michael, United States, January 18, 2014

My story is not a happy one..I was born on August-17-1994 The day I came into the world doctors were so interested in my Birth defect be as it's a rare one..As a child I was bullied beyoned imagining ...

19q Duplication

19q Duplication

Teri, United States, January 16, 2014

For two years our lives have been anything but normal. We fought and advocated for our child since the day she was born. After countless hours spent in doctors offices, hospitals, and therapy sessio...

My disease

My disease

Jan, Slovenia, January 15, 2014

Hello! I am Jan. I am 19 years old. I live in Slovenia (Ljubljana). I have had TPN from birth 20 hours per day. I want to get some friends from K.i.s.E.e.V. I am buying new pump at the moment. I would...

SAFIA SAFIA

HELPSAFIA.COM

Safia, Ehlers-Danlos syndrome, Hereditary Angioedema, Brazil, February 22, 2018

Safia is 14 years old and in 2016 she started to have a lot of health problems: unexpected, frequently and constant bleeding, severe abdominal pain, Pulmonary Atelectasis, skin swelling, allergic reac...

See i look 'normal' See i look 'normal'

Its ok to be rare

Leanne, Vasculitis, United Kingdom, February 21, 2018

I was diegnosed pretty quickly with vasculitis, and then Lupus also about a year later. My mum has Vasculitis and scleroderma so when i started to loose the feeling on my left side, felt weak and tire...

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