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).
Wow, what an amazing difference in the pictures!
An amazing story.....and your positive outlook is to be admired. i hope that the plan will help reduce your pain and ability to get around and I wish you all the best. great to see you post.
HI Meegan !
Glad to see you here. Thank you for sharing your story and pictures w/ us. You have taken a strong step in moving forward now even further. Congratulations!
My daughter is the PWS member of our family. She also has KT ( vascular syndrome ) in her left left and torso- She had a blood clot around the age of 9 , the KT was diagnosed at that time.
She is now 18, a healthy girl and doesn't let the PWS or vascular issues hold her back! She's been an all star competitive cheerleader, we've travelled the nation and she's moving on with her life now in Junior college , work and her goals.
SOOO glad you were able to attend the conference. Wasn't that just wonderful?? We attended in 2004 and will attend again one day -- just no clue when. We have met some of the best friends one could ever have thru the PWS ( www.birthmarks.com ) support list- I even email w/ several folks on a regular basis, We've shared marriages, births, blues, and happy times all online ! :)
Thanks again for sharing. Stories like yours are always needed to keep that encouragement and inspiration in the air for families!
I truly loved reading your inspirational story.
My daughter who is almost 18, also was born in a time when nothing was being done to treat H's., and she grew up with the same questions and stares.. Her H was on her nose.
Your before and after photos are amazing, I wish I could have met you at the conference , but I could not attend this year. My daughter is a freshman in college and the weekend of the conference was Parents Weekend at her university.
Maybe someday soon we will have a chance to meet in person, but until then, thank you so much for sharing your story!
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