Michael, Behçet's Disease, United Kingdom, January 25, 2019
Behcet’s Disease pronounced “Betjets” or “Besh-hays” is as I know it a persistent inflammatory condition associated with impaired auto immunity and pain. The symptoms persist and reoccur over long per...
Edith, inthrahepatic cholestasis of pregnancy, United States, January 25, 2019
In 2016 my husband and I were expecting our first son, my pregnancy was anything but easy I was constantly in the hospital with miscarriage threats I was put on bed rest. At 24 weeks I became extremel...
Megan, Spondyloepiphyseal dysplasia congenita, United States, January 24, 2019
I was normal when I was born, I was you normal healthy baby.I played softball for about 7 years, up until the fall of 2018. That was the time I started to show signs of hip and back issues. For about ...
Muhammad Khurram Shehzad, Crigler-Najjar syndrome, Pakistan, January 24, 2019
It is suspected that my two month old son has Crigler Najjar Syndrome. We knew this by the high level of jaundice 10 days after his birth. After a month, the doctors admitted him to the hospital and a...
Chae, Relapsing polychondritis, United States, January 24, 2019
Hi I'm Korchae, I am 30 years old and I have been diagnosed with a rare disease called relapsing polychondritis. I was diagnosed in 2016 with this cartilage attacking disease. Due to my condition my a...
Katie, Intrahepatic cholestasis of pregnancy, United States, January 23, 2019
From the beginning I had an awful pregnancy. I just always felt awful, I couldnt eat anything all I could do was drink Coca-Cola. I was about 20 weeks and started itching i remember being at work and ...
Kevin, Gardner syndrome, Canada, January 22, 2019
Living with Gardner Syndrome has become a challenge by itself in 2018. I had the IPAA surgery back in 1993, at the time, the doctors told us once it was done you would never deal with the syndrome aga...
Michelle, Intrahepatic cholestasis of pregnancy, United States, January 22, 2019
This pregnancy was anything but easy. It started off with bleeding the first few months. I went to the ER several times. The first time I went I had passed a large clot, the doctor assumed I lost the ...
Allison, Addison’s Disease, United States, January 17, 2019
I lost 50 pounds in 3 months back in 2013, leaving me at a tiny 102 pounds and standing at 5’8 it made me look even smaller. Over the matter of a couple years and numerous doctors in the Bay Area and ...
Brenda, SYNGAP1, United States, January 16, 2019
Here's our rare disease story...many of you have heard it, some have not.Danika came into this world like any other. Labor was quick, but the doctors did not bring her to me right away and when I look...
Lauren, Punctate inner choroidopathy with choroidal neovascularization, United States, January 12, 2019
Back in 2006 when I was 34 I was noticing an area of warped vision in my right eye. After 6 months it was finally diagnosed as PIC with CNV. After 4 treatments of Avastin, a colorectal cancer drug, i...
Birsel, FMF (Familial Mediterranean Fever),AA-Amyloidose,u.a., Germany, January 12, 2019
English:Mrs.Birsel Ağca,who lives in Germany,has FMF (Familial Mediterranean Fever) disease for 20 years,and has dedicated herself to create awareness related to FMF disease.She has two kids,they also...
Kayla, Narcolepsy-cataplexy syndrome, United States, January 11, 2019
The breeze blew the curtains in my dark room. My eyes were glued to the glowing stick on stars arranged on the ceiling to look like constellations. I felt his finger stroke the side of my face and hot...
Owen, Kallmann syndrome, United Kingdom, January 5, 2019
At 16 my life changed.I was diagnosed with a rare condition. The condition is called Kallmann syndrome and it's main symptom is not going through puberty. To be 16 and not go through puberty puts you ...
Lori, Undiagnosed, United States, January 5, 2019
What About M.E.?Living with a Little Known and Widely Misunderstood Neurological DiseaseMyalgic Encephalomyelitis Chronic Fatigue Syndrome, or ME CFS for short, is the disabling disease that I’ve been...
Brianna, Myositis, United States, January 4, 2019
For anyone who is struggling with their rare disease. At the age of 16 I was diagnosed with Myositis, an autoimmune disorder that attacks my muscles. This was very difficult for me at the time. I cou...
Katerina, Pituitary adenoma, Greece, December 29, 2018
My name is Katerina Ronga. I am a 38 year old woman, mother of an 8 year old boy and Senior Quality Manager at the largest telco in Greece (OTE Group of companies / DT Group).I was recentrly diagnosed...
Brad, CVID, United States, December 28, 2018
Twenty-one letters… all one word“I don’t want to alarm you, but are you bleeding from anywhere?” Those were the words that came across the phone that would change my life forever. Guardedly, I respond...
Patti, Central Pain Syndrome, Cavernous Malformations, United States, December 17, 2018
Since 2010 I live with a rare, excruciatingly painful and poorly understood neurological pain condition known as central pain syndrome, CPS. CPS is caused from damage to the central nervous system, a...
Rebecca, Primary ciliary dyskinesia, Australia, December 15, 2018
At 24 weeks pregnant we discovered our baby boy had Situs Inversus Totalis, meaning he had reverse positioning of his heart and some organs. Apparently you can go all through out your life not knowin...
