Friday, May 2, 2014

Genetic Study, 6 years and Support

This week has been a crazy busy week! I can't believe that it is already Friday.

I haven't mentioned it yet, but I am part of a genetic study that a Women's Institute is doing out of Pittsburgh. They are doing the study on 1,200 people. It is only on women who suffer from POF, 1% of women in the world have it and there isn't that much research that has been done. There is no cure for it and the only fertility option is donor egg. The study is being done to see if there are any genetic links to what causes it or how someone gets it. There are some autoimmune diseases that they think cause it but once you are tested for that and it is negative, you get an answer of unknown. Which is what I was told.

I had to fill out a consent form and the history of my cycles, then have about a 15 minute phone conversation with one of the case workers. We went over my history and then family members history. After that they sent me 3 tubes for my blood that I was able to have drawn here. All I had to do was go to the doctor, have them draw it and then ship it back to Pittsburgh.

Blood draw for genetic testing
I have always said since my whole journey started that if I can help just one person through this in the future that would make me ecstatic. Although I probably won't see anything from this study that will pertain to me, it should be able to help future generations out and that means a lot to me.

Part of this testing is also that they are able to get my families DNA as well. Most importantly my immediate family, and then any of my aunts, uncles and first cousins. I asked for their help and have had an overwhelming response. I always knew I had an awesome family but this just proved it to me even more!

Tuesday we celebrated our anniversary. We went on our very first date 13 years ago and were married on that same day 6 years ago. It ended up being a great day. We were both working but made time to see each other for lunch and then went out on a romantic date for dinner. I have the most amazing husband, always my rock and my cheerleader. Sometimes I get down about our infertility journey and he is always there to lift me up. I really have been blessed by having him and his family in my life. I couldn't imagine my life without him in it.

Anniversary Dinner at Theo's Steakhouse
I have been part of an Infertility Support group since I found out about my diagnosis. It is a group on Facebook. It is private so the only people in it are people that are struggling with infertility that are in the area I live in. We talk about doctors, ask questions, etc. It has been very helpful. Since last week was National Infertility Awareness Week the administrator asked if we would be interested in having our first ever support group meeting face to face.

I was a little nervous at first. I haven't ever met anyone in the same position as me that is still struggling through it. I have talked to people I know that have been through it, but ended up having children. Just not the same thing as I am experiencing right now in my life. I wasn't going to go at first but then decided it would be good for me, and I am so glad that I did.

There were 4 of us that were there, we met at a local coffee shop that had a door that could be closed so we could talk about whatever we wanted. We were there about two hours and it was such a breath of fresh air. To actually talk to people that understand what I am thinking and going through with doctors. Fighting for your own health. So glad that I got to meet these wonderful ladies and can't wait for our next monthly meeting.

First ever NWA Infertility Support Group

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