Tuesday, January 25, 2011

Turner Syndrome Awareness Month- February

So, this February will be the first ever Turner Syndrome Awareness month. February is perfect for TS because it's the shortest month of the year. One of the most prominent symptoms of TS is short stature.
This is a cause that is very, very near to my heart because my daughter Jillian has Turner Syndrome. Jillian is 5 years old and I am SO, SO grateful that she was diagnosed at birth. You can read her story in an earlier post from last year. You can also learn more about TS by visiting Turnersyndromesociety.org.

TS is much, more than short stature and it effects 1 in 2,500 females. 98% of baby girls with TS are miscarried. TS accounts for 10% of miscarriages. there is no cure for Turner Syndrome.

Raising awareness is important because early diagnosis is imperative for the best treatment for TS. It very often goes undiagnosed because the symptoms vary so widely. So many women have missed out on important medical help simply because their doctors did not recognize the symptoms until it was too late to treat them.
Raising awareness will also help the girls and their families get the financial assistance to treat their various needs. Just to give you a picture... Jillian saw 11 specialists in her first year of life. She sees an endocrinologist every 3 months, a cardiologist and a nephrologist (kidney). She takes a growth hormone shot every night. The medicine alone costs approx $2,000 a month. She has had other expensive medical issues and will begin hormone replacement therapy around the age of puberty. THANK GOD our needs are met and we have help with all of her medical bills. That is not the case for all of the girls.

I am purchasing little pins to wear for the month of Feb. If you would like to help raise awareness by purchasing a pin, please let me know. They also have bracelets for $3 and t-shirts for $18.
Thanks so much for your help in raising awareness so these girls can live the healthiest lives possible.

1 comment:

Mands said...

I can see how awareness is key. I knew nothing about TS till God gave the gift of little Jillian. I realize now, her making it to her very debut on earth was even miraculous compared to most other TS pregnancies. She has an amazing future ahead of her.
"For I know the plans I have for you, declares the Lord. Plans to prosper you, not to harm you. Plans to give you a hope and a future."-Jer. 29:11