YARA, Pulmonary arterial hypertension, Brazil, January 26, 2020
Minha História de Vida & Superação! Sempre fui uma criança arteira,amava me divertir correndo atrás das borboletas aos 05anos, era a minha brincadeira favorita,observar as cores,a textura e a dive...
Stacey, Pyoderma gangrenosum, United States, January 25, 2020
I'm currently 34 years old, I have had Rheumatoid arthritis since I was about 8. When I was 20 I had my right hip fused together as there was no cartilage left between my hip joint. At age 25 I was di...
Sarah, Hereditary spastic paraplegia, MAP2 Variant, United Kingdom, January 25, 2020
When our son Corey was born, he was happy and healthy with no sign of any health problems. We had no idea what the future held for us. It wasn't until Corey was around 9 month old that we realised he ...
Donna, Nail-patella syndrome, United States, January 23, 2020
Always knew I was different, but never knew anything other than "I was born with this." The typical symptoms of NPS (fingernails, elbows, tiny-baby-sized patellas [in my case]) were present at my birt...
Birsel, Amyloidosis FMF,, Germany, January 22, 2020
Ich wurde in einem kleinen Dorf in Gümüşhane , Türkei geboren. Als ich 7 Jahre alt war, kam ich mit meine 2 Geschwistern und meine Mutter Zweck Familien Zusammenfügung nach Deutschland zur unserem Vat...
Holly, Esophageal Cicatricial Pemphigoid, Bullous pemphigoid, United States, January 22, 2020
It struck suddenly and changed my life. One peaceful evening I began vomiting blood. After being released from the emergency room, I spent the next 3 days in agonizing pain; not even able to swallow m...
SALMI, Mucopolysaccharidosis type 2, Malaysia, January 22, 2020
About Daniyal He was born on 28th January 2016 delivered normally with no complication. At that moment he brought us joy and laughter. Cute little boy as normal as other baby.When he was six months ...
Karen, SCN8A, United States, January 21, 2020
My daughter was born in March of 1998 and was delivered having a seizure. The first diagnosis she received was Epilepsy at 1 month of age. Over the next year, her seizures increased and her developm...
amy, branchio-oto renal syndrome, Ireland, January 21, 2020
hi my name is amy i have multiple conditions such as branchio-oto-renal syndrome, daunes syndrome joint hypermobilty syndrome, and normal pressure hydrocephalus very young and many more but there not ...
Noemí, Complex regional pain syndrome, Spain, January 20, 2020
My name is Noemí, I am 27 years old and I live in Spain. I suffered from this disease since 2015, Complex Regional Pain Syndrome is a disease that affects the sympathetic nerve and produces a lot of ...
Bridget, Afibrinogenemia, United States, January 20, 2020
My name is Bridget, I'm 24 years old, and I have a rare bleeding disorder called Afibrinogenemia. This is a type of bleeding disorder in which my body does not produce fibrinogen, a crucial blood clot...
Rachit, Isaac syndrome, India, January 20, 2020
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 Conditions are mute...
Skyler, Alexander disease, United States, January 17, 2020
Eleven years ago, the unspeakable happened. After a particularly bad month of dealing with migraines, my neurologist decided it was time for an MRI. My doctor wanted to make sure nothing unusual was...
진웅, Sjogren's syndrome, myelitis, vasculitis, Korea. Democratic People's Republic of, January 15, 2020
안녕하세요!저는 15살 때부터 쇼그렌증후군과 척수염 그리고 혈관염 등의 질환을 투병중입니다.또한 저는 한국에서 살고 있고 신학대학교를 다니거 있습니다. 감리교신학대학교와 성결대학교를 다녔습니다다.저는 어렸을 때 아버지 없이 어머니 혼자서 저를 키우셨고 너무도 가난해서 나라에서 기초수급자로 등록되어있습니다.저는 하루하루 열심히 살아가면서 하나님의 기적으로 이...
Jessica, MECP2 Duplication Syndrome, United States, January 14, 2020
I’ve always been a worry wart when it came to my son, Jackson. Although I never wanted to find anything wrong with him, I always felt like there was something we were missing. Turns out I was right. T...
Siva, Pompe disease, infantile onset, Malaysia, January 11, 2020
Swathi was born healthy on the 12th of April 2017. At the age of 6 months, upon prolonged boughts of pneumonia, a series of tests led to the shocking results of her diagnosis with Infantile Pompe dise...
Zoyeb, Ataxia with occulomotor apraxia, India, January 11, 2020
From Challenging Phases To Facing ChallengesStory of Zoyeb from Chennai / India - ATAXIAWritten by his father – Iftikhar -------------------------------------------------------------------------------...
sakon, Adenosine Kinase Deficiency, Thailand, January 5, 2020
Charm, 4-year-old girl from Thailand.She is ill with inherited metabolic disorders, Adenosine Kinase Deficiency. She is the only patient with this disease in Thailand and the world is still very rare....
Taylor, Isovaleric acidemia, United States, December 30, 2019
After a long labor and complicated c-section, our beautiful son Samuel was finally here! He was such a calm and alert newborn. I remember the nurses wheeling him into my recovery room, and he would ju...
Blair, Common variable immunodeficiency, epilepsy, calcium deposits on brain, decreased white matter, rheumatoid idiopathic arthritis, von willebrand disease, Australia, December 26, 2019
My two little superhero's, My second daughter Maddee was born in January 2012, she was a perfect tiny 5 and half pound and 44cm she fit in his sisters dolls clothes. Her sister and I were completely ...
