My son has donnai barrow syndrome
Tarah, Donnai-Barrow syndrome, United States, October 20, 2019
My son was diagnosed with Donnai-Barrow syndrome.
Tell your story!
Share your photos, videos and your experiences!
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.
Sudden loss of leg control
juares, Undiagnosed, Spain, October 13, 2019
Time to time, suddenly, I lose control and sensitivity in my legs. Then I fall down.It's long for aprox. 15 minutes.Nobody knows what is it.
Rare kidney syndrome with no public awareness
Jessica, Renal nutcracker syndrome, United States, October 11, 2019
I was diagnosed with Nutcracker syndrome 2 years ago. I had multiple unexplained symptoms for years that all resulted from this rare syndrome. It wasn't until I had an appointment with a new doctor, t...
Battling MWS (Muckiest-Wells Syndrome)
B, Muckle-Wells syndrome, United States, October 10, 2019
By the summer of 2016, we've been to just about every doctor possible and through countless procedures in the hopes of finding answers with what's going on with with my daughter. It was also the summe...
Simona
Simona's Story
Grasiela, Hypotonia-speech impairment-severe cognitive delay syndrome, Poland, October 3, 2019
Simona is a 13 year old Polish girl who was born on the 21st April 2006 in Wexford General Hospital. At birth everything was fine but after 3 months developmental issues started to show. Simona has be...
رحلة كفاح
هبه, Mucopolysaccharidosis type 4, Somalia, September 28, 2019
فتاة تبلغ من العمر 18 سنه عاشت حياتها مع مرض نادر هو مرض عديد السكاريد المخاطي من النوع الرابع اكتشفت بهذا المرض عندما كان عمرها 9 سنوات، وهذا المرض جعلها تعيش حياتها بين المستشفى و بيت ولكن هي لم تست...
Maladie des os de verre
Laure, Osteogenesis imperfecta, France, September 13, 2019
Bonjour je suis nee avec la maladie des os de verre. Jai passé mon enfance dans des plâtre. Pas de sport, pas de risque... On crois que sa passe a l'adolescence on l'oublie, mais en faite a 30 ans on ...
tired of being tired
jamilla, undiagnosed, United States, September 5, 2019
Hello My name is Janice mother of Jamilla and I am writing on behalf of my daugher Jamilla. As a mother you always want to say its ok but very difficult to say that whne it no solution to her issues. ...
AN ENCOUNTER & COPING UP WITH A RARE CONDITION
Rachit, Isaac syndrome, India, August 28, 2019
AN ENCOUNTER & COPING UP WITH A RARE CONDITION by Rachit This is written at a time when it’s as serious, an issue as Climate Change & Impact.Rare Health Condit...
Hereditary Angioedema
How Advocacy for Hereditary Angioedema can save lives
Jill, Hereditary angioedema type 3, United States, August 22, 2019
My name is Jill, I am 35 years old, and by the looks of me most of the time, I am a normal green haired, tattooed mega nerd from Northern California. I can often be found wearing bright, bold clothes,...
Ben Arda Mert Gökmen
Sistinozis ile yaşamayı öğreniyorum
Gülnur, Cystinosis, Turkey, August 18, 2019
Merhaba oğlum Arda . Altı aylıkken Sistinozis olduğunu öğrendik. Önce çok korktuk. Organlarını tek tek kaybedeceğini zannediyorduk. Onlarca ilaç ve belki diyaliz belkide nakil olacaktı. Sistinozis öğr...
On the Road AGAIN!!
Amy, Scleroderma, United States, August 15, 2019
Here I am again on the road. I spend more than half of my life in cars driving to and from Hospitals, Clinics, Doctor’s Offices and Treatment Centers. I guess you could say it’s just par for the cours...
My daughter's battles
Rachel, Acute necrotizing encephalopathy of childhood, Canada, August 8, 2019
Spring came early in 2009, our then 3-year-old daughter is an avid puddle jumper and my 9-month-old son has an ear infection. I am sleep deprived; my husband and daughter decides that it’s the perfect...
Just me!
The Skin I live in
Amy, Scleroderma, United States, August 7, 2019
I have spent the majority of my adult life SICK. When I say sick I am not speaking about a common cold or even a appendicitis. My last year as a teenager I was diagnosed with a rare chronic AutoImmune...
Living with Multiple Hereditary Exotoses (MHE)
Keidi, Multiple Hereditary Exostoses, Canada, August 6, 2019
Hi my name is Keidi and this is my story with Multiple Hereditary Exotoses. (MHE)It all started when I was 2 when my mom started to notice bumps all down my spine. When my mom took me to my pediatrici...
Living with Dermatomyositis and type 1 diabetes
Mara, Dermatomyositis, United States, August 3, 2019
I was diagnosed with diabetes when i was 11 im now 36 and 4 years ago was diagnosed with Dermatomyositis. Life has been hard my A1c levels are high but my Myositis is on remission due to IV infusions ...
Cadasil I have it. I need hope and God
Onawu, CADASIL, United States, August 3, 2019
To be honest, I feel like an alien because I have had 8 incidents since 2016. Thank God I have no brain damage. I have been toldthat my problems are complicated. I was finaly diagnosed with cadasil in...
My Body odour
Dinithi, Trimethylaminuria, Sri Lanka, August 2, 2019
I am suffering from body odour issues since 2014. I was 12 back then. I somehow managed my life till 2017 I think been a child helped me.I was 16 in 2018 that's the year I found about the condition c...
Even stiff person syndrome cannot stop me!
Nitnem, Stiff person syndrome and related disorders, India, July 31, 2019
Imagine a life in which the brain runs twice the normal speed, with an uncertain focus jumping onto various things ; while your spine and limbs feel as stiff as rock, hands continuous ly trembling, wh...
Visual snow
Scarlett, Visual snow syndrome, India, July 23, 2019
I was 7 years old when i first suffered this disease . I was scared of the floaters and dots i see . As i grow up i begin to develop my interests towards various rare diseases . Then i found a word v...
News
