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.