My goal?…

I know I want to raise awareness for Turners Syndrome but I asked myself today what exactly does that mean? I thought about it all day and came to the conclusion that I dont just want people to know about Turners Syndrome but I want to bring awareness to doctors, ob-gyn’s, midwives and any other pregnancy related medical professional. I want them to start educating patients with not just basic information on pregnancy but also about the things that could happen, not to worry or scare anyone but just enough information to cover the “what if’s”. Not every pregnancy is perfect and problems arise all the time all over the world but most women never think about a problem happening and they carry on thinking everything is perfect and then when something tragic happens and the pregnancy is lost they are distraught and often the first thing they ask the doctor is “why” and most women wont have any answers right away or ever. If they had been more educated on things that could go wrong then maybe when something happened it would not have been such a shock and they would at least have known that something could have been wrong and out of their control. I know in my situation I went into the pregnancy thinking everything was perfect and was shocked when everything was dropped in my lap so suddenly. It was a lot to process and I think had I been more educated I would not have handled it as roughly. I would have already known in the back of my head that something could go wrong. Im not saying to lay out every thing that could go wrong because I agree it might be too burdensome but there are common chromosomal disorders that should be talked about.  Women that are in the “High Risk” pregnancy class due to age or previous history always gets advised of these scenarios so why not non “High Risk” pregnancies ? Some of the common syndromes are Trisomy 21 (Downs Syndrome), Trisomy 18 (Edwards Syndrome), Trisomy 13 (Patau Syndrome), Turners Syndrome etc; These need to be discussed. The blood test (AFP) is done in most pregnancies to estimate the chance/odds of having a pregnancy with a chromosomal abnormality but yet those abnormalities are only discussed if there was a “positive” blood test result. So my whole point is this should be talked about more in the beginning of the pregnancy. The first appt should include information like this. Remember… KNOWLEDGE IS POWER!


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