Factor V Leiden; Prothrombin 20210; Protein C or S deficiency and many more...
Dear All,
I would like to raise awareness of these devastating afflictions which can affect 1000's of women and their unborn babies right here in the UK.
Approximately 1 in 20 people have one or more of these clotting disorders and never find out because it is not standard practise to test for them. One thing that doctors do encourage you to get tested for is the risk of Down Syndrome. They ask you to take a blood test to calculate the risk and then they give you the option to have an amniocentesis which itself carries a 1% risk of causing a miscarriage. The actual statistics for Down Syndrome are as follows:
Mothers below 25 have an average risk of about 1 in 1600. This rises to about 1 in 340 at the age of 35 and 1 in 40 at the age of 43.
Compare the above figures to the risk of one or more of the blood clotting disorders. Next consider that many parents are willing to raise a child with Down Syndrome, whereas a dead baby gives you no options.
I am unfortunate enough to have both Factor V Leiden and Prothrombin 20210 which doesnt double my risk of clotting, it actually increases it by a factor of 10! However, I am one of the lucky ones, I know what I've got and I know how to treat it. Some of my family members have not been so lucky. In two generations, or just 4 women, there have been more than 15 miscarriages and still births. My mum lost 8 out of 10 pregnancies and my sister has lost 3 out of 6 pregnancies.
If you or any members of your family have had unexplained miscarriages or there is a history of clotting or DVT in the family, especially in those who have been pregnant it would be advantageous for you to get referred to a haematologist for genetic testing. Lack of knowledge and understanding from the medical professionals is placing many babies lives in unnecessary danger.
Even though the doctors knew about my condition and its dangers and the fact that my mother and sister both lost most of their babies very early in pregnancy, they suggested that I only use the medication during the six week period after my baby was born. Essentially, they only saw the clotting disorder as being a risk to me and not to my unborn child. I had to insist on medication from the start. I am convinced, through the experiences of my family, that I would have already have lost my baby if it wasnt for the medication. Weve just had my first scan at 12 weeks and the baby is the correct size and looks perfectly healthy. I am due on October 24th 2005.
The standard medication during pregnancy for these conditions is a daily injection of Clexane which is a Low Molecular Weight form of Heparin. This drug thins the mothers blood and stops clots from forming in the placenta and umbilical cord. It is these clots which result in the starvation, asphyxiation and eventual death of your baby.
Due to taking Clexane as a preventative measure against DVTs for long haul flights I discovered that I seem to be allergic to it. As a result I am actually taking Tinzaparin which is similar to Clexane although not as widely used or as well tested.
If you would like to know more about these conditions I have found the site http://www.fvleiden.org to be very informative. Ive also joined this Yahoo Group (http://www.egroups.com/group/FVL-PG) which has allowed me to speak to other women in my condition from around the world.
I hope you find this information useful and I wish you all the best.
Kind Regards,
Chrystal Carter
Edinburgh
Dear All,
I would like to raise awareness of these devastating afflictions which can affect 1000's of women and their unborn babies right here in the UK.
Approximately 1 in 20 people have one or more of these clotting disorders and never find out because it is not standard practise to test for them. One thing that doctors do encourage you to get tested for is the risk of Down Syndrome. They ask you to take a blood test to calculate the risk and then they give you the option to have an amniocentesis which itself carries a 1% risk of causing a miscarriage. The actual statistics for Down Syndrome are as follows:
Mothers below 25 have an average risk of about 1 in 1600. This rises to about 1 in 340 at the age of 35 and 1 in 40 at the age of 43.
Compare the above figures to the risk of one or more of the blood clotting disorders. Next consider that many parents are willing to raise a child with Down Syndrome, whereas a dead baby gives you no options.
I am unfortunate enough to have both Factor V Leiden and Prothrombin 20210 which doesnt double my risk of clotting, it actually increases it by a factor of 10! However, I am one of the lucky ones, I know what I've got and I know how to treat it. Some of my family members have not been so lucky. In two generations, or just 4 women, there have been more than 15 miscarriages and still births. My mum lost 8 out of 10 pregnancies and my sister has lost 3 out of 6 pregnancies.
If you or any members of your family have had unexplained miscarriages or there is a history of clotting or DVT in the family, especially in those who have been pregnant it would be advantageous for you to get referred to a haematologist for genetic testing. Lack of knowledge and understanding from the medical professionals is placing many babies lives in unnecessary danger.
Even though the doctors knew about my condition and its dangers and the fact that my mother and sister both lost most of their babies very early in pregnancy, they suggested that I only use the medication during the six week period after my baby was born. Essentially, they only saw the clotting disorder as being a risk to me and not to my unborn child. I had to insist on medication from the start. I am convinced, through the experiences of my family, that I would have already have lost my baby if it wasnt for the medication. Weve just had my first scan at 12 weeks and the baby is the correct size and looks perfectly healthy. I am due on October 24th 2005.
The standard medication during pregnancy for these conditions is a daily injection of Clexane which is a Low Molecular Weight form of Heparin. This drug thins the mothers blood and stops clots from forming in the placenta and umbilical cord. It is these clots which result in the starvation, asphyxiation and eventual death of your baby.
Due to taking Clexane as a preventative measure against DVTs for long haul flights I discovered that I seem to be allergic to it. As a result I am actually taking Tinzaparin which is similar to Clexane although not as widely used or as well tested.
If you would like to know more about these conditions I have found the site http://www.fvleiden.org to be very informative. Ive also joined this Yahoo Group (http://www.egroups.com/group/FVL-PG) which has allowed me to speak to other women in my condition from around the world.
I hope you find this information useful and I wish you all the best.
Kind Regards,
Chrystal Carter
Edinburgh
