The beginning

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 of the tibia bone that revealed an osseous anomaly. Throughout the following year, multiple lesions on the ribs, tibia, skull, spleen, cervical, and left arm (with metal brackets inserted into it and the wear of a protective corset) were discovered. No treatment was proposed for still an unknown disease. On November 1998, I suffered pains in the back, tibia and vertebral column together with a fracture on the ribs 2 months later. After many different consultations in Nancy and Paris, doctors talked about osseous angiomatous lesions and then in June 1999 they put a name on my pains "cystic osseous lymphangiomatosis". I felt anxious and affected by all the exams I was enduring and the fact I just could not live like other children. In August 1999, I was admitted to the Herriot Hospital of Lyon where I had a complete medical control and received pamidronate injections intra venous (Aredia) + vitamin D and calcium. My spleen and column were strongly affected but we all felt better that I had a treatment. Doctors talked about a rare osseous disease, invalidating and potentially evolutionary, called Gorham.

Everything was going fine with Aredia injections in Lyon, that occurred quarterly over a 3 day period, until July 2002, when I began to have multiple epilepsy attacks (through visual troubles). I had an electro encephalogram and a cerebral MRI that revealed multiple lymphangiomatosis in the skull. Doctors prescribed anti epileptic drugs as well as an anxiolitic.

In November 2003, doctors decided to adjust the Aredia injections in Lyon every 6 months over 2 days (considering my growth) and between April and December 2004, after having experimented MRI and scanners, we were told the disease is active again, affecting the 4th cervical, with new lesions on the dorsals as well as a lumbar and demonstrating that the lesion on the leg had progressed.