Natasha, Pemphigus vulgaris, United Kingdom, December 23, 2019
In April 2017 I started getting 'ulcers' in my mouth that just wouldn't go! I visited the dr who said there was nothing they could do just deal with it! (lovely) After another 3 months I went back and...
Carina, Ehlers-Danlos syndrome, kyphoscoliotic type, United States, December 14, 2019
I would like to share my miracle story with others to help inspire them and give them hope it’s a way of me paying it forward. My name is Carina and I was born in 1974 in Buenos Aires, Argentina to It...
Stephanie, Twin Anaemia Polycythemia Sequence, Netherlands, December 13, 2019
At 10 weeks pregnant, I can still remember the look on my ultrasound technician's face. "They told you you were having a baby? " Well, here it is! And ... here's the other one! It's twins!I was shock...
Anthony, Immune thrombocytopenia (ITP), United Kingdom, November 21, 2019
After over 13 years of living with my ITP I can reflect upon plenty of incidents during that time. It has certainly been eventful, to say the least.It all started in 2005 when I began getting random p...
Stacie, ROHHAD, United States, November 6, 2019
Chylles was healthy, high energy little girl with no fears, no worries & full of life. That's before she was affected by ROHHAD symptoms just prior to her 3rd birthday. After a year long battle w...
Ernestina (Ernie), Silver-Russell syndrome, United States, October 27, 2019
I had to show my California ID, when I was already over 18 to a lady that works at Walmart so I could get a sample of a pizza that was being sold. Yup, just for a slice of pizza, I mean I laughed it o...
Larry, Klippel-Feil malformation, United States, October 25, 2019
Hello, This is not my story, but of my grandson. Back in 2012, I was blessed with my first grandchild. Jayden came into our lives and we were blessed. In the hospital, I noticed that something wasn't ...
Shilpi, GNE myopathy, India, October 22, 2019
A short film on GNE Myopathy patient Shilpi and narrated in her own words. Shilpi is a lawyer and currently teaches at O.P Jindal Global University. It was only in her twenties that she learnt that sh...
Tarah, Donnai-Barrow syndrome, United States, October 20, 2019
My son was diagnosed with Donnai-Barrow syndrome.
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.
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...
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...
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...
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...
Paul, EGPA, Congenital myasthenic syndrome, Australia, September 25, 2019
Hi I’m Paul and this is my story so far….A long time ago in a galaxy far beyond the black stump lived a hermit trying to get by with his electrical contracting business. This hermit was supposed to ha...
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 ...
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. ...
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...
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,...
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...
