Factor V Leiden Support

I have a blood clotting disorder called Factor V Leiden (FVL). It is a hereditary genetic disorder that causes the blood to clot more than it should. While FVL in itself is harmless, it significantly increases the chances of life threatening complications such as blood clots, deep vein thrombosis (DVT), strokes (CVA), heart attacks, and pulmonary embolisms (PE). In women it also increases the chances of having miscarriages.

Unfortunately, I was one of the victims of the complications FVL can cause, and I had a stroke when I was 32 years old. After being diagnosed, I searched the internet and stumbled across a support group for FVLers in Yahoo Groups.

Since this was virtually the only place I could find information on FVL, I joined and became an active member. Then a year or so later the owner of the group decided to step down and asked me if I'd take control of the group. I'd been helping her moderate the group for a few months, and she trusted me to keep it running the way she would want it done.

After thinking about it for a while, I told her I would. It would be a big change- instead of being someone looking for support, I'd be helping others who are searching. And even though it was "only" a Yahoo Group, I took the responsibility very seriously.

That was over 7 years ago, and to this day I still run the group with the help of a few other moderators. Unfortunately the owner never returned. But with the help of our wonderful volunteers, both mods and members, the group has grown significantly as FVL and blood clotting has become more prevalent.

When asked why I still do it after all of these years, I tell people its my way to give back to the global community, and hopefully prevent others from going through what I went through. It was a horrible experience, but instead of sitting back and feeling pity for myself, I decided to take what I learned and try to support others.

The Factor V Leiden Support Group is a family oriented support group for all ages. If you have FVL, or know someone who does, feel free to join us and post your questions, your concerns, or simply a message to say hello.