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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.
Проблемы взрослого больного Несовершенным Остеогенезом

Проблемы взрослого больного Несовершенным Остеогенезом

Сергей, Russian Federation, February 24, 2014

Меня зовут меня Сергей Ильюшин мне 36 лет, проживаю в г.Балашиха. Я болею Несовершенным Остеогенезом Osteogenesis Imperfecta или хрустальная болезнь. Я с рождения болею Несовершенным Остеогенезом Oste...

Degos

Degos

Brian, Ireland, February 24, 2014

I am a 40 year old Irishman who was diagnosed with Degos Disease in 2007. I would like to take a little paragraph to express a huge debt of gratitude to Judith (and Alan) Calder who run degosdisease.c...

My journey with Pseudoxanthoma Elasticum

My journey with Pseudoxanthoma Elasticum

Andy, United Kingdom, February 24, 2014

My ophthalmologist first noticed ‘an unusual appearance’ on my retinas back in 1994 and referred me to the local hospital for a more in-depth check where I was told I had angioid streaks in both eyes....

Recovering from Guillain Barre Syndrome

Recovering from Guillain Barre Syndrome

Anita, Australia, February 24, 2014

It was 1990, when i became severley ill with what i now know as Guillain Barre Syndrome.I was a Mummy of 2 kids and only 23 at the time. What a journey i was in for needless to say i had no idea what...

Welcome to Rare Disease Day

Welcome to Rare Disease Day

Atom, United States, February 24, 2014

Some days I feel jealous of handicapped people who possess special talents. You've seen them in the media: Driving cars even though they have no arms, or running races when they have no legs, or paint...

Life with IIH/PTC

Life with IIH/PTC

Laura, Canada, February 22, 2014

I have been struggling with "migraines" for almost 9 years. A few years back I noticed weird things happening with my vision. By the end of 2012 I had terrible peripheral vision and was in immense pai...

AS, DM and ILD

AS, DM and ILD

Lisa, Australia, February 22, 2014

I have a rare disease. It is called Anti Synthetase Syndrome with Dermatomyositis and Intersitial Lung Disease. This disease is a rare autoimmune disease which has affected my muscles, joints and lung...

tarlovova cysta

tarlovova cysta

anna, Slovakia, February 22, 2014

Volám sa ANNA mám 52 rokov . Moje dlhoročné trápenie,nočné budenie ,ležanie v bolestiach ,ked vám už ani lieky nezaberajú a hlavne ten pocit,že moja rodina má so mnou trápenie ..Ked ja som mala byť ma...

"Karah"

"Karah"

robin, Albania, February 22, 2014

On July 23. 1995 our daughter Karah was born . The doctors told us that she had a genetic disorder, DNA testing was conducted. Three days later we were told that Karah had Trisomy 18. We soon became e...

Dego's disease - malignant atrophic papulosis

Dego's disease - malignant atrophic papulosis

Lyndsey, Canada, February 22, 2014

Diagnosed June 2013 - Degos disease is an extremely rare vasculopathy that affects the lining of the small and medium veins and arteries, resulting in blockage of the vessel and tissue infarction. The...

Road to CDKL5 disorder diagnosis

Road to CDKL5 disorder diagnosis

Tia, Canada, February 20, 2014

Diagnosed: October 2011 at age 7 "For the longest time I had thought she was autistic with a seizure disorder." Tia was born five days overdue. It was a routine weekly check up and being five d...

paralisis periodica sospecha de una canalopatia entre otras

paralisis periodica sospecha de una canalopatia entre otras

luisa, Colombia, February 19, 2014

yo soy la hermana de luisa fernanda y laura sofia ella son gemelas ellas cuando estuvieron en el vientre estaban bien nacieron y a los tres meses de vida ellas comenzaron a mirar hacia un lado y volte...

Marilena is suffering from the  Okamoto syndrome

Marilena is suffering from the Okamoto syndrome

Anna, Greece, February 19, 2014

Our first daughter Marilena (from Maria Eleni) was prematurely born (32 weeks of pregnancy) due to oligohydramnios, a few weeks before the Olympic Games were held in Athens in 2004. She had very bad r...

Michele beautiful eyes

Michele beautiful eyes

nadia, Italy, February 19, 2014

Michele's story was written just for us, his family. This beautiful baby with precious smile and beautiful eyes  came to our lives on the 17th of February 2013 and we had so much fear  that anything c...

Dylan's Story

Dylan's Story

June, United States, February 19, 2014

Dylan 's Story As many of you know Dylan was diagnosed with Glut1 Deficiency, this is a rare genetic disorder that affects the brain metabolism. Dylan has been on a very strict diet and has improve...

Amya And CDKL-5

Amya And CDKL-5

Tiffany, United States, February 17, 2014

Hi my name is Tiffany. I want to tell you about my daughter Amya. Amya is almost 4 years old, we have been dealing with many many seizures since she was 28 days old. My pregnancy was normal, when she ...

Sindrome de Poland (Spanish)

Sindrome de Poland (Spanish)

Tamara, Spain, February 17, 2014

Yo nací con síndrome de Poland por lo que se y he ido descubriendo a lo largo del tiempo es una enfermedad que no es hereditaria, y que tiene diferentes patologías dependiendo la persona, tiene un tra...

behcets disease

behcets disease

michael, United Kingdom, February 17, 2014

I first realised my health was out of the norm when I presented a red eye with mouth ulcers to the family GP while at senior school in 1982 who sent me that day to the local hospital eye unit. Several...

How do we cope with Rare Disease - CADASIL

How do we cope with Rare Disease - CADASIL

Billie, United States, February 17, 2014

Thank you in advance for reading this. Hi, I am known as Billie all over the world who deals with CADASIL. CADASIL is a rare genetic disease. I am very persistent person and would not stop researching...

Aggressive Fibromatosis

Aggressive Fibromatosis

Caitie, United States, February 16, 2014

I have aggressive Fibromatosis or Desmoid tumors. My left arm is riddled with tumors. I've had 14 surgeries, IV and oral chemotherapy, radiation all to keep from losing my arm entirely. Without organi...

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