I am publishing this with thanks to liddyshriversarcomainitiative.org, and AMAZING site with some awesome information and awareness.

• In the United States alone, 12,770 people are expected to be diagnosed with sarcoma in 2008 (SEER). Sarcomas make up about 1% of total cancer diagnoses in the United States.
• One in approximately every 350 people in the U.S. will be diagnosed with a sarcoma at some time during their lifetime. *
• Almost one-half of bone sarcomas and about one-fifth of soft tissue sarcomas are diagnosed in people under the age of 35. *

What is angiosarcoma?

Angiosarcomas are malignant sarcomas of vascular endothelial cell origin. Endothelial cells make up the lining of vessels. Angiosarcomas can occur in any region of the body, although they are most commonly located in the skin, breast, liver, and deep tissue. Cutaneous angiosarcomas, which are angiosarcomas of the skin, are commonly found in the face and scalp region (Holden 1987 and Morales 1981). Approximately 60% of all angiosarcomas are cutaneous. Soft tissue angiosarcomas account for up to 25% of these tumors, and breast angiosarcomas account for roughly 8% of angiosarcomas. Overall, angiosarcomas account for 1-2% of all sarcomas (Enzinger 2001 and Brennan 2001).

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If you do the math, Angiosarcoma only accounts for 100-200 cases per year in the United States. No WONDER there is no funding. Sarcoma alone, effects roughly around 13,000/year, and because so many other cancers affect much high numbers, this classification of cancer is often overlooked.

I think about things such as plagues, or infections. Let’s say, we just found out that beef was contaminating people and 150 people got sick instantaneously from this beef infecting people. The disease was SO rare, that not many doctors had even heard about it, let alone knew what to do to treat it. There were just a few experts across the US that could help people, but because the beef had been sent out all over the US, many of its victims were in places that were unable to reach/afford to see these experts. By the time the patients presented symptoms of the illness, it was often too far past any viable treatment options, and most doctors took weeks, sometimes months, to diagnose it. The headlines across the US were reading, “Illness spreads and is quickly killing 150 people.” Of course you would here about it. Things would be going out left and right to return the meat, funds would be started immediately so those affected would get the financing and travel expenses needed to see the experts and get the treatments they needed. Doctors would be working round the clock to come up with something to ‘fix” this virus.

Angiosarcoma is no different. Those 150-200 or so people every year are often not diagnosed with Angiosarcoma until it is Stage IV or Stage V. As we found when Kevin first experienced symptoms, hardly anyone had even heard of Angiosarcoma, let alone knew how to treat it.

In the just 4 months that Kevin battled this disease, we had already used up at least half of our lifetime maximum on our health insurance policy, and once that ran up, no one would ever have approved him for private healthcare.

Most people don’t live within a 90 minute drive of places like Johns Hopkins, Mayo, Sloan-Kettering, Fox Chase, or any of the other phenomenal hospitals who have made advances in Sarcoma treatment.

Most cannot afford to travel to cancer hospitals, and most private health insurance companies do not cover travel expenses for these stays, let alone for their families to accompany them.

How many of you, before reading our story, had heard of Sarcoma, let alone Angiosarcoma? If you google it, how many reliable sources of information are out there? Have you ever seen a Yahoo! headline saying anything about Angiosarcoma or sarcoma? Rarely on all the above.

Just because these 13,000 cases of Sarcoma, and these 150-200 cases of Angiosarcoma are diagnosed THROUGHOUT the year, versus a virus that affects instantaneously, doesn’t mean it is any less deserving of attention, or funding. The cause of Angiosarcoma is widely unknown except in rare cases of foreign materials causing this horrific disease.

If a virus was spreading, killing a large number of its affected, and without direct cause, wouldn’t you raise questions? Wouldn’t you write a check to support these families who have been affected, who have no answers?

Those of us who have been affected by Sarcoma live a very isolated life, and most, not by choice. Sarcoma, and Angiosarcoma, are so unknown. I knew nothing about these types of cancer before Kevin was diagnosed. I felt ignorant to this disease that has been destroying lives. For those of us who have lost the battle, there are no answers. It kills before we even have a chance to fight. And there are so few options to fight, that it kills even while we’re fighting.

Please, give Sarcoma patients a chance and consider donating to the Liddy Shriver Sarcoma Initiative.

http://liddyshriversarcomainitiative.org/

It is an amazing organization, one that I wholeheartedly support and back. I don’t believe a cure will happen soon, but if we can just get more information, more treatment options, and better testing, I believe Sarcoma patients have a fighting chance to win against this devastating disease.

Consider helping me organize my KIK Sarcoma: 2009 Team Sarcoma. Let’s Keep it Kevin and fight this disease for him. For me. For everyone who is fighting, and for those who no longer can.