December 31, 2010, 3:12 pm
Funding sarcoma research. An article about cancer research with focus on sarcomas.
Sarcoma is a rare type of cancer. Sarcomas account for about 1% of all diagnosed adult cancers (15-20% of children cancers) and have more than 50 subgroups. There are only few cases of the same type of sarcoma diagnosed in the whole world during one year. I had a fellow-patient diagnosed with angiosarcoma and at that time she was supposedly one of two known patients in the world. This was an extreme case, but it illustrates how difficult it is to test new treatments and perform research on sarcomas.
I was diagnosed with synovial sarcoma in 2004. Because I wanted to know about my options, I started to gather information about this type of cancer. I soon discovered that there were few sarcoma clinics and sarcoma doctors because the disease was so extremely rare.
In spite of my horrifying diagnosis I was very lucky that my clinic, Karolinska Universitetssjukhuset in Stockholm, Sweden, had a team of sarcoma specialists. I was lucky that I met a surgeon specialising in soft tissue sarcomas located in trunk, which was my case. My luck did not end there. My clinic was also one of few clinics in the world specializing in precision radiation, which saved my life. And the fact that the clinic is only 10 minutes by car from my home makes my life also much easier. I often praise my luck. What would happen if I lived in a different town, or a different country?
Driven by international networking and dedication of many individuals the sarcoma research gained momentum during the last years. And I am extremely thankful to all sarcoma doctors and everyone else involved in sarcoma who never gave up on us, sarcoma patients, in spite of us being such a small group.
During my information gathering I found a private initiative dedicated specifically to sarcoma, The Liddy Shriver Sarcoma Initiative, whose mission is to improve the quality of life for people dealing with sarcoma. The Initiative is active in three main areas:
- Publishing the latest sarcoma information
- Funding sarcoma research
- Providing support to sarcoma patients and their families
Even though the organization is US based, it provides funds to research projects all over the world. You can learn more about it and about sarcoma on their own Web site: