“How has your disease/disability impacted your life?”

When I was in high school, I came across a Harvard journal article about Klippel Trenaunay Syndrome. I read pages and pages of research about a three year old female with a misshapen, port-wine stain covered upper body. “How weird,” I thought as I examined a picture of the little girl’s hands. “They look just like my hands during my toddler years.” While I continued to read about the little girl’s surgeries in Boston, I realized I was reading about my own body. I was the three year old female with KTS (later re-diagnosed with CLOVES). I immediately ran to my mom’s office and yelled, “Mom! I’m on the internet! There’s a journal article written about me!”

My mom chuckled and replied, “Lindsey, there are several journal articles about you. You’ve been part of quite a bit of research!”

I grew up thinking that KTS was a burden; however, the journal article showed me that KTS could be a blessing. When I had surgery a few months after I read the article, I gave the doctors permission to use my body for research. One year later I joined an ongoing lymphatic study at Harvard. A few months ago I spoke to medical students about KTS and its complications.

One day I realized that KTS/CLOVES is the gift that keeps on giving. It has given me the opportunity to see God work through my hardship to help others. I’ve watched God use what makes me different to actually make a difference in the world. I’ve witnessed my tragic difficulties lead to triumphant discoveries. I’ve seen God take what is considered “useless” and somehow use it for good.

How has my birth defect impacted my life? It has taught me to never underestimate what God might be doing behind the scenes. When my surgeons in Boston were working meticulously on those misshapen hands, the surgeons never imagined that I would actually be able to type this post. They never dreamed that I would view KTS/CLOVES as a gift. They never knew that the little girl in the article would one day write about those hands, too.

looking at hands

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