Factor Five Leiden

Cyndi's Story & Family History

When I was 19 years old, I developed my first venous thrombosis. I had been on oral contraceptives for about three months at the time and they felt this was the cause of my first deep vein thrombosis (DVT). Three years later, following the birth of my second child, I developed my second DVT, I was 22 years old. Of course this was assumed to be related to childbirth. Both DVTs had been in my left calf, so I wore my support stocking and tried to elevate my legs as much as possible. Although that leg was never quite the same again.

Three years after my second child was born I was in my first year of college. My son was in the second grade and was going to have some time off, so my mother met us at school to take him home with her for a few days. She looked great, happy and full of her usual energy. We had coffee and talked for awhile, then I went to class. I never saw her alive again. She died very suddenly that night. Dad thought she was having a nightmare, he tried to awake her, but she was gone. They had to take her out of the home with my little son there. She was 46 years old, it was ten days before her 47th birthday. We never found out why she died, although it always haunted me. I wanted to live longer than my mom.

Two years ago I lost my big brother Mike, this was very sudden also and just as shocking for us. He was 47 years old. Six months older than mom was. He died of a sudden heart attack.

This last May I developed my third DVT, in five more weeks I would have been 47. I was surpassing my mom age finally and felt somehow that would mean I would be alright. I almost wasn't. By the time I got to the hospital the blood clot had traveled from my right calf to my thigh, just inches from leaving my leg. I was so lucky to not have developed a pulmonary embolism.

My daughter Dakota's drawing of her family... Since this last episode I have found out that I am homozygous for Factor Five Leiden, which means both of my parents had/have it. My younger brother and sister both have it, as well as both of my children. My daughter is homozygous also, which means both of her children are heterozygous. My son is heterozygous , we are not sure yet if his son has FVL or not. We plan to have him checked.

I love all these people so much. The ones we have lost as much as the ones still here. Several Doctor's that I have spoken with believe we most likely lost mom and Mike to FVL. I can't think of a better reason to do this support group. I also want to help educate my family and yours. Maybe together we can save a life of someone we love.

Since starting this group a very wonderful friend of our family, Mike Streicher, has started setting up a non profit organization for me, as a sponsor. My whole family will always be grateful to him for his generosity and support.

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