Wednesday, February 1, 2017

Turner Syndrome Awareness Month

Turner Syndrome Awareness

Written By Renee Arbia

It seems like winter has been flying by so quickly. Our little butterfly, Imogen is now almost seven months old and is growing like a weed. She is now 18 pounds and 22 inches long. She is great in the weight department, but already showing up small in the height department. This is very typical of Turner Syndrome girls. 

Women with Turner Syndrome typically are just less than five feet tall. If Turner Syndrome is diagnosed early growth hormone shots can be given every night to help the body grow. Ideally, girls start growth hormone shots from around two to three years of age. Many girls are diagnosed at the age of nine when puberty has not started. Turner Syndrome is a chromosome disorder where either all or some cells are missing the X chromosome.

There are a lot of different issues with Turner Syndrome. Girls have to be checked often by many doctors. Heart and kidney issues along with hearing and visual issues are very common among girls with Turner Syndrome. The good news is that the majority of medical issues that may arise can all be solved if found early. 

Turner Syndrome is a chromosome disorder that is extremely rare. In fact only 88,000 cases are in the United States. Many more things need to be discovered about this disorder. There are many women and girls who may have it, but have not heard about it and do not know the signs.

Turner Syndrome Awareness month is just that. Spreading awareness about a disorder in order to help other women and girls get checked for it. We are spreading awareness for more research and discoveries, for more girls finding other girls just like them, and for helping families be able to support their girls mentally, emotionally, physically and financially.

The Turner Syndrome Global Alliance directly helps families of girls who have Turner Syndrome. They make sure they receive the care and therapies that they may not be able to afford. Denise Culin is the founder of the Turner Syndrome Global Alliance and was inspired by her daughter to start this organization. The Turner Syndrome Global Alliance  are the voices for a patient and parent perspective as they seek collaboration with scientists, researchers, and doctors to ensure that Turner Syndrome research and resources have meaningful outcomes. 

The month of February is Turner Syndrome Awareness Month. We are asking YOU READING THIS to please help spread awareness. There are 10 choices below, pick one and please do it for awareness, BONUS if you want to do all 10! I know you are busy and you are asked a million times a day to do something for somebody, but all I’m asking is a voice for these tiny girls who just need to be seen. Use whatever platform you have for the good and please help spread Turner Syndrome Awareness this month!
Please help spread awareness for Turner Syndrome this month by doing some or all of the following!

1)      Change your profile picture to our ribbon or a picture of Turner Syndrome for the month of February. 

2)      Share a Turner Syndrome story (Imogen's Birth Story) once a week this month!
3)      Share the TSGA Donation page once a week this month!
4)      Tell people about the amazing butterfly girl you know or just heard about!
5)      Ask others if they ever beat a 2% odd? Then tell them about the tiny little girl who kicked that odd!
6)      Advocate for healthcare for disabilities
7)      Wear a butterfly on your person once a week. When someone compliments you, tell them about the amazing butterfly girl you know!
8)      Donate to the Turner Syndrome Global Alliance or another Turner Syndrome organization
9)      Mark your calendar for next February 2018 to raise the awareness again
10)   Be sure to #TurnerSyndromeAwareness your social posts

Be sure to share Imogen’s Birth Story on your social networks!

I will be constantly reminding you this month about Turner Syndrome Awareness because it is time to spread awareness for our little butterfly, Imogen. Please feel free to copy, paste, and share all my information and be sure to make sure it benefits Turner Syndrome Global Alliance.

The Turner Syndrome Society of the United States is also a wonderful organization and we will be talking about them later in the month!

 Feel free to give Turner Syndrome lots of love this month! 

#TurnerSyndromeAwareness, #NextGenerationSAHMBlog, #Imogen

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