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...
Olivia, Ataxia-telangiectasia, Canada, December 6, 2018
Olivia is 5 years old and was just recently diagnosed with Ataxia Telengieactia (AT). This disease effects her mobility, immune system, speech and make her at greater risk for cancer. There is current...
Isabella, Parry-Romberg syndrome, New Zealand, November 24, 2018
Parry–Romberg syndrome is a rare disease characterized by progressive shrinkage and degeneration of the tissues beneath the skin, usually on only one side of the face but occasionally extending to oth...
Kori, Mowat-Wilson syndrome, Canada, November 23, 2018
When my daughter was diagnosed in March of 2018, I had no idea what Mowat-Wilson syndrome was at all, but all of Khloe's doctors gave us a lot of good websites to go and read up about it. Life with MW...
Ko, Hypoparathyroidism, France, November 18, 2018
J'ai 50 ans et je vie avec une maladie hormonale invisible qui se manifeste par des crises de tétanie et divers troubles neuromusculaires, physiques, cognitifs et émotionnels. En 2004 je me suis révei...
CARL, Narcolepsy-cataplexy, Belgium, November 18, 2018
Je suis atteint d'une Narcolepsie de type 1 avec calaplexie et paralysie du sommeil...Depuis tout petit je suis différent des autres mais malgré tout je suis le papa de trois grand garçons que j'adore...
Barbara, Cutis Marmorata Telangiectatica Congenita, United States, November 12, 2018
Six year old Ella, the daughter of Britney, represents the many children in southern Illinois who receive services through TLC.Ella was born with an extremely rare syndrome called "m-cm" or "m-cap". E...
Matteo, EEC syndrome, Italy, October 25, 2018
I love soccer and I owe it so much. I am affected by a rare disease and, unfortunately I have never had the possibility to see my first child to be born, due to the same syndrome I have. In order to ...
Matina, Mutation of 2 Genes: CAV 3 - RYR 1 ), Greece, October 21, 2018
My name is Matina, I am 46 years old, I am married , I am a mother of three children, grandmother of 2 grandchildren and I also have a dog. I suffer from a rare disease. At the age of 40, my health pr...
Martin, Addison disease, Sweden, October 19, 2018
Please watch this video (linked below) to hear about my life and journey living with Addison disease:https://vimeo.com/martinwallgren/thelastremaininglight Find others with Addison's disease on RareCo...
