Factor V Leiden Online Support Group

After being diagnosed with Factor V Leiden, I began to research the disorder online. While I was relieved to finally have a diagnosis of why I kept clotting so much, it was still very scary to learn it was a disorder that would affect me for the rest of my life. I wanted to find out as much as I could about it, especially after being misdiagnosed so many times in the past. Never again would I simply rely on the doctors. I would do my own research and help manage my care.

But where would I turn? At that time there wasn't a lot of information available, and what was out there wasn't nearly as detailed as what I wanted, nor was there a good way to ask questions and get feedback from people like me, the ones who have it. So I began to look to other places besides websites, and that is how I stumbled upon the Yahoo support group Becky started a few years earlier. At the time it was called LeidenFactorVSupport.

The group sat dormant for a while, but as it began to pick up I became an active member. I enjoyed the fact that it was very interactive. I could ask questions and get responses from people who had the answers because they had already been through it. I could get different opinions on treatments from regular folks just like myself. And most importantly, it was a place where I could post my fears and anxieties and people would take a moment to just tell me it would be okay and they had the same feelings as I was experiencing.

Since I was staying at home and recovering from my stroke, I had all the time in the world to work on the group, so Becky asked me if I would help as a moderator. Her time was becoming more limited and she needed help moderating messages and adding new members. I told her I would love to.

Shortly thereafter, Becky needed to step away from the group and asked me if I'd be interested in taking it over completely. Since the group had been so helpful to me, and because I had a vision of what it could become, once again I affirmed that I would be glad to help her out.

Over the years I've implemented a lot of changes. We've added some additional moderators, changed how messages are distributed, added new welcome messages, updated the links, and more. We've even changed the name to make it less confusing- FactorVLeidenSupport. And the group has continued to grow at a steady pace.

Now over nine years old and with nearly 1,000 members from every country and walk of life you can imagine, we still try to support one another just as we did when it was 15 members.

If you or someone you know has FVL and you are looking for a place to post your questions, find some friends, share your fears, and find out more information, then we hope our group will be for you. Click below to join, we'd love to have you.

Click to join Factorvleidensupport