Hollie was born on the 7 February 2009 and lives in the north east of England, she was a very healthy baby and the only thing different about her was that she was born with a neonatal tooth which was quickly extracted after birth due to being loose. At 18 ...
Read More

When I was in my early 20s (around 1987), my left leg began to swell for no reason. Within months my calf was as big as my thigh and my whole leg was tight from fluid. Doctors put me in a stocking and had me exercise. Days into the “therapy” ...
Read More

Aberdeen, Scotland, UK Diagnosed Age 18 Months Alfie was born on 10th June 2007, weighing a healthy 8lbs 9oz. He seemed like any other child for the first 8 months and then one day, almost overnight, we noticed that one of Alfie’s legs was fatter than the other. We made ...
Read More

Diagnosed Age 11 At 2 years old I suffered with Pneumococcal Meningitis and was given 48 hours to live. Luckily I responded to antibiotics and survived. Since then I've encountered problems with disliking loud noises and bright lights and had an unstable bladder as a child, this now means I ...
Read More

At the age of 1 year (1975), I was diagnosed with hemolymphangiomatosis by a doctor in Madison, WI after having problems with fluid buildup in my abdomen and legs. A few years later the doctors had notified my parents that there was a good chance that I would never be ...
Read More

Age 26 I was diagnosed with lymphangiomatosis in Feb 2009. It all started with the detection of a right vein thrombosis, and then the discovery and removal of 2 liters of chylus ascites from my abdominal area (2007). Unfortunately, after many tests and procedures (blood work, x-ray, CT Scan, Bone ...
Read More

I'm 18 years old, born and currently living in New Zealand. I am presently studying NCEA Level 3 Economics, English, Statistics, Information.Technology and Information Science at college, and hope to study Economics and Information Science next year at university.I was diagnosed with Gorham's disease in 2006 shortly after my father ...
Read More

After 8 years of marriage Claire’s arrival was very joyous. The first Grandchild on my side of the family and first girl in 35 years on the other, she was long anticipated. She is very strong-willed, caring, and compassionate. Claire has a strong faith in God and is “a party ...
Read More

In February of 2008, I took my then 17 month old son Leyton to the pediatrician's office for a cough. I normally wouldn't have been too concerned about it, but he was supposed to have tubes put in his ears the following day. I didn't want him to have a ...
Read More

I've been ill since I was born in 1974, but my Gorham's disease has gone through different stages. I'm told that as a baby I had a lot of pain, crying and fever. What I remember is that the Gorham's disease started to develop very fast when I was about ...
Read More

I was born in 1988 in the North-East of France from a family of four, which I am the youngest. I grew up playing with my brother and sisters without any trouble until 1997, when I was 9 years old and suffered a fracture on my left leg with biopsy ...
Read More