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Blood and Blood Vessel Message Board


Blood and Blood Vessel Board Index


No, I don't mind at all. Information is power when it comes to this type of problem. My brother was 24 and my sister was 17 when they passed away. My cousin died several years before that in her teens. She was put on hormone treatments for acne and developed the clots as a result of being on the hormones. This was back in the early 70's. No one knew what was going on in our family at that time. It was only after losing my sibs that we were referred for genetic testing and learned there was actually a name for what we had and that it's rare.

So little was known about AT III deficiency back then. It was years later that we even learned the Heparin we'd been given each time for DVT's was actually ineffective for the factor 3 deficiency. And, of course, we learned that the pill and any kind of hormone therapy was a no no. Thank goodness menopause was a lot kinder to me than it could have been without the hormone therapy. :-)

My family was much like yours. My immediate family was tested and two of my aunts had their children tested. But, the rest couldn't be bothered. I think, when it hasn't affected you personally, or you're distanced from it, as your family is, it's easy to live in denial and assume it won't ever touch you. We did learn one thing and you may want to ask your doctors about this with regard to your particular disorders. We were told that children may test negative and then later in their teens or twenties test positive. I guess, at various stages of one's life, the amount of the clotting factor in the blood can change. So we were urged to have our children retested in their late teens or early 20's. I don't have children myself. But my aunt had her's tested twice. They tested negative both times. My niece, on the other hand, tested negative as a child, but in her early 20's developed a DVT and retested positive.

I've been on Coumadin since my first DVT at 16. Just wondering if you are still on anti-coagulants and, if so, what you are taking. Gotta run. Look forward to hearing from you again. Take care.
[QUOTE=AuntNanc;5054833]No, I don't mind at all. Information is power when it comes to this type of problem. My brother was 24 and my sister was 17 when they passed away. My cousin died several years before that in her teens. She was put on hormone treatments for acne and developed the clots as a result of being on the hormones. This was back in the early 70's. No one knew what was going on in our family at that time. It was only after losing my sibs that we were referred for genetic testing and learned there was actually a name for what we had and that it's rare.

So little was known about AT III deficiency back then. It was years later that we even learned the Heparin we'd been given each time for DVT's was actually ineffective for the factor 3 deficiency. And, of course, we learned that the pill and any kind of hormone therapy was a no no. Thank goodness menopause was a lot kinder to me than it could have been without the hormone therapy. :-)

My family was much like yours. My immediate family was tested and two of my aunts had their children tested. But, the rest couldn't be bothered. I think, when it hasn't affected you personally, or you're distanced from it, as your family is, it's easy to live in denial and assume it won't ever touch you. We did learn one thing and you may want to ask your doctors about this with regard to your particular disorders. We were told that children may test negative and then later in their teens or twenties test positive. I guess, at various stages of one's life, the amount of the clotting factor in the blood can change. So we were urged to have our children retested in their late teens or early 20's. I don't have children myself. But my aunt had her's tested twice. They tested negative both times. My niece, on the other hand, tested negative as a child, but in her early 20's developed a DVT and retested positive.

I've been on Coumadin since my first DVT at 16. Just wondering if you are still on anti-coagulants and, if so, what you are taking. Gotta run. Look forward to hearing from you again. Take care.[/QUOTE]





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