Meegan's Story -- Living with hemangioma
I've started this post about 10 times, not sure what to say, exactly.
I was born with a massive segmental hemangioma that covered the right side of my chest, right arm, and hand. I was born in 1978, and the only treatment available to my parents, even in Seattle, was to just simply try to keep me alive. I had major infections and high-output heart failure. By some miracle, they kept me alive long enough for the hemangioma to involute, leaving behind major scarring and some loss of function with swelling and pain. When I was 6, I had a plastic surgery to free up the range of motion in my shoulder and chest. I learned to answer the question "what's that on your neck/arm/hand" by saying I was burned, so I didn't have to explain.
Today, I have fairly significant pain issues and bouts with numbness and my hand turning blue. Over the last 10 years, I have seen several vascular surgeons, a few primary doctors, on and on and on. No one knew what was wrong, or had seen a major hemanioma before. I have been told to "keep warm."
On coming to this site, I found out about the conference last weekend and was able to attend. I met SO many awesome people who are going to any length to help their children get the help they need so that they don't suffer and don't carry the burden of the questions and prejudice. It was an amazing experience. With the right connections and resources, a case like mine could be a thing of the past, how amazing to me.
In my own consult, it was made clear it was too late for surgical intervention for myself, but I have a plan that was suggested going on from this point that may reduce the pain and make it easier to get around.
Today, I have a beautiful life that I love, and for that I am grateful. I also know that today more than ever I am NOT alone.
Have attached "before" and "after" pictures (in the after, I'm in the gray, with the affected right arm showing).