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 4 years. I fell a lot while walking and then I started to develop a limp. After several times complaining about pain in my legs, my parents took me to the hospital in Argentina, there they took some x-rays and observed that I was missing different bones in my pelvic and hip regions. They didn’t know why, so the doctors assumed that it was tuberculosis and polio. Because of this, during my childhood I received a lot of wrong medicine and treatment. I also had a lot of different severe infections like meningitis etc. due too my immune system failure and spent time in and out of hospitals while the doctors were trying to figure out what I had. They performed several biopsies of my bones even though they already had plenty. With no diagnosis, there was no cure in sight and no wish to find out what really was wrong with me. The doctors told my parents that they didn’t know how long I would survive. At the same time, my parents were fighting to find a solution in a very difficult set of circumstances. We were refugees in Argentina, and as such had very poor conditions and medical possibilities. Finally, in 1983 we got asylum in Denmark.
I was 9 when I came to Denmark with my family and by that time my pelvis was literally gone. I had lymphatic fluid in my lungs and was having additional problems with my immune system. I’d still not been given a diagnosis, so the doctors in Denmark concentrated on treating the most severe symptoms which was the fluid in my lungs. They drained the fluid and after a while my condition stabilized for some time.
After almost a year in Denmark and many different exams, we were told I had a very strange and rare condition called Gorham’s disease and that they couldn’t do anything about it but treat the symptoms. So, as a child, I tried not to let it affect my life too much. I kept playing football (soccer) on crutches, and tried to attend school as normally as possible. This was difficult to maintain though because my hospital visits became more and more frequent.
This pattern was repeated many times during puberty and at 15 years I had a very serious infection and was in coma for some days and they didn’t know if I would make it or not. Thank God I overcame it and slowly got back on wheels. But it took some time (years) before I was completely ok.
I had many different infections and problems with my lungs over the next 10 years until I began taking medication for my immune system as well as for my bone deficiency. This was in 2001-2, and it was then that everything changed and my situation began to stabilize for the most part. We (me and my family) are still battling with the sequelae of Gorham’s disease (massive destruction of my bones) in my legs, pelvis and back. But thank God it is getting easier to fight this battle with the help of www.lgdalliance.org and of course www.gorhams.dk, www.gorhams.org and all the other people around the world that are working hard to create awareness about this disease.
The mutual help can give us patients and families more possibilities to live a more “normal” life. Currently I’m trying to get my bachelor’s degree in Spanish, something I couldn’t have done before because of my unstable health and other things.
I’m sure that there are many patients and families that are affected by Gorham’s and for each one of us there is a different story of fight and suffering. Thank you to the effort of so many people, especially little Marcus and his lovely family, we can keep helping each other.