Carrying the cost of MoyaMoya Disease
Lisa
State: Massachusetts
Congressional District: MA04
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Diseases
Neurological Disease, Rare Disease
Issues and Challenges
Lisa has encountered: Copay Issues
My Story
I suffered three strokes between ages 21 and 25. I had been a healthy 21 year old young woman about to graduate college in Washington, DC when I was struck with classic stroke symptoms (that I didn’t know at the time). Eventually diagnosed with a a stroke and brain disease, I underwent debilitating treatment and rehabilitation for years. I was devastated when placed on Disability at age 25.
Through my treatment, I was blessed with amazing support from my family and friends, but I needed a purpose. I began volunteering with the American Heart Association. I would eventually get married and we would grow into a family of four.
In 2015, I had a return of my initial symptoms and was shocked to learn that I suffered a fourth stroke. This revealed that I had a rare disease called Moyamoya Disease, for which there is no cure. The only treatment to prevent more strokes and further damage was having two brain surgeries. I underwent these grueling nine-hour surgeries filled with feelings of pain and fear. I was now a mother, so leaving my children for these surgeries was heartbreaking. Fortunately, after rehabilitation and recovery, my surgeries were declared a success and I now have seven-times more blood flow in my brain than I had before.
I am one of the lucky ones who was able to overcome so many health threats. Yet, financially, this was challenging as I had to travel for a month across the country to an expert neurosurgeon. We were able to handle these out-of-pocket costs with the help of family and friends, but not everyone can. Over the past twenty years, I have endured thousands of dollars of out-of-pocket costs for my health treatments. We've had to make sacrifices in other areas to pay for my care. We need to change this!
My Motivation and Inspiration
My inspiration is my family: my two children, my husband and my parents. I'm blessed by their love and support. I stay strong and fight for them.
I'm motivated to help other Moyamoya Disease, stroke and rare disease patients who come after me. My 18-year diagnostic odyssey was challenging and unnecessary. I've had to fight and advocate for myself in so many ways, and pay so many costs and payments for my care. I want to help so others don't have to experience that lengthy diagnosis time, the hard challenges and the financial burdens. I advocate and speak out for patients everywhere.
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