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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.
28 years living with Poland Syndrome

28 years living with Poland Syndrome

Una en Cien Mil, Poland syndrome, Peru, January 14, 2021

Hola! Nací con Sindrome de Poland pero no recibí un diagnóstico hasta que tenía aproximadamente 6 años. En la clínica a mis padres no les dijeron nada, por más que era visiblemente notorio. Nunca sabr...

My worst nightmare

My worst nightmare

Antonio, Post-SSRI Sexual Dysfunction (PSSD), Italy, January 5, 2021

My name is Antonio and I am a 24 years old Italian boy. I took an antidepressant (fluvoxamine) for a pure OCD of reactive type appeared shortly before, between late May and early June 2019. I was pres...

"Lili is waiting for a similar friend"

"Lili is waiting for a similar friend"

Liliana, Chylomicron retention disease, Hungary, January 5, 2021

My name is Liliana and the reason why I am writing here is that I have never met a person living with same disease like mine, and I didn't find it on this page either, so I decided to share it.Since m...

Callum - NBCRS Callum - NBCRS

CALLUM'S JOURNEY WITH NCBRS

Lee, Nicolaides-Baraitser syndrome, United Kingdom, January 5, 2021

Callum was born in March of 2006 weighting 5lb 9oz. At the start of the pregnancy everything seemed to be progressing well, then at the 20 week scan the hospital noticed mum's HCG (human chorionic gon...

I am Tristan I am Tristan

I am Tristan

Tristan, Sickle cell anemia, United States, January 5, 2021

Hello everyone! My name is Tristan from the United States and I am living with Sickle cell anemia.My passion in life is fashion, design, and entertainment. I am a professional model, an actor, and a f...

Losing my Sexuality to Antidepressants

Losing my Sexuality to Antidepressants

Emily, Post-SSRI Sexual Dysfunction (PSSD), Canada, January 5, 2021

EmilyBC, CanadaPSSD 1.5 yearsI am a 24-year-old BC woman suffering neurochemical damage from the SSRI antidepressant Citalopram/Celexa. It has resulted in the total removal of my sexual functioning, i...

Harvey Harvey

Harvey and SMA

Nancy, Spinal muscular atrophy type 1, Kenya, January 5, 2021

My name is Nancy and I am a mother to two beautiful babies, Harvey who is four and a half and my little one Sienna who has just turned 9 months. We live in Kenya. My son Harvey has a rare condition; S...

Elizabeth Elizabeth

Onto the other side of me

Elizabeth, Systemic Lupus Erythematosus (SLE), Tanzania. United Republic of, December 30, 2020

This is for everyone who feels like it won’t get better and this is my story. I was diagnosed with rare, fatal, isolated, chronic condition called Systemic Lupus Erythematosus (SLE) commonly known as ...

Living with MCTD: A phoenix attempt

Living with MCTD: A phoenix attempt

Vanamala, Mixed connective tissue disease, India, December 24, 2020

                                                                                                                                              Living with MCTD: A phoenix attempt    Don't wait for life...

Dr. Henry T. Lynch and myself shortly after my surgery Dr. Henry T. Lynch and myself shortly after my surgery

Always Forge Ahead w/a Purpose

Dan, Attenuated familial adenomatous polyposis, United States, December 20, 2020

My name is Dan, retired U.S. Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran. I'm an 8 year hereditary colon cancer WARRIOR. I underwent my first, and only colonoscopy, May 2012, at 5...

My daughter is sick from Crigler Najjar syndrome

My daughter is sick from Crigler Najjar syndrome

KATERINA, Crigler-Najjar syndrome, Greece, December 17, 2020

My 15 months daugher is sick from Crigler Najjar syndrome and she does 13 hours phototherapy at home.When she was 1 month we came to the hospital where they saw thar her jaundice was 34 something that...

Jon-Kristian Jon-Kristian

I am JK

Jon-Kristian, Osteogenesis imperfecta, Norway, December 16, 2020

My name is Jon-Kristian, but you can call me JK! I am 12-years-old and I live in Norway with my family. I am living with a rare disease called Osteogenesis imperfecta.I love hanging out with friends ...

Carrigan Carrigan

My journey to a diagnosis

Carrigan, Congenital sucrase-isomaltase deficiency, United States, December 12, 2020

My name is Carrigan and ever since I was little I've had a lot of trouble with chronic stomach pains after eating. I'm now 15 and have just recently been diagnosed with CSID. It took an extremely long...

James: Engineering PhD Student and Skilled Guitar Player Taken Down By Lasting Brain Injury Caused By SSRI Medication

James: Engineering PhD Student and Skilled Guitar Player Taken Down By Lasting Brain Injury Caused By SSRI Medication

James, Post SSRI Sexual Dysfunction, Canada, December 8, 2020

Post SSRI Sexual Dysfunction (PSSD) for 5 yearsAutumn 2014: I was 22 year old engineering student an Ontario University. I had been with my fiancee that I was very much in love with for 6 incredible y...

Sclerowarrior

Sclerowarrior

Helen Faith, scleroderma, Philippines, December 3, 2020

I am Faith,19,a typical bubbly, happy and a goal-oriented young lady. I have so much in my mind; dreaming of becoming somebody, thinking of a beautiful future ahead of me. I am always persistent and d...

Power Wheelchair Power Wheelchair

Expendable

Ember, Chronic inflammatory demyelinating polyneuropathy, United States, December 2, 2020

My story is one that is considered "unusual" by most, however, many people suffer from the same inequalities I have faced over my lifetime. My goal is to raise awareness of my and other stories that l...

Maël Geleophysic displasia Maël Geleophysic displasia

Maël and his Geleophysic dysplasia

Nadine, Geleophysic dysplasia, France, November 29, 2020

Maël was born in 2015 with a rare disease called Geleophysic Dysplasia. Less than 80 cases are reported across the world. Each case is unique but all are affected by dwarfism. Maël has the severe form...

Invisibly Rare

Invisibly Rare

Nabila, Hemophilia, India, November 29, 2020

Do you know the meaning for rare is “extraordinary.” Yeah, I’m rare, but I’m also extraordinary. My name is Nabila, female, age 35, with parahemophilia (factor V deficiency). I am a resident of Ahmeda...

Nuestra princesa Ariadna

Nuestra princesa Ariadna

Melissa, Niemann-Pick disease type B, Costa Rica, November 29, 2020

Ariadna es nuestra princesa arcoiris, muy esperada y deseada. Es super inteligente,  empática y cariñosa. A sus tres años fue diagnosticada con Niemann-Pick tipo B. El diagnóstico tardó 3 meses, ya qu...

Post-SSRI Sexual Dysfunction (PSSD) Post-SSRI Sexual Dysfunction (PSSD)

The antidepressant that stole my sexuality and never gave it back to me.

Lora, Post-SSRI Sexual Dysfunction (PSSD), Italy, November 28, 2020

My name is Lora; the story I tell begins in 2013, when I was 25 years old and, suffering from a severe depression caused by my sense of loneliness, dysmorphophobia and social anxiety, I was prescribed...

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