Feburary is Turner Syndrome Awareness Month

January 30, 2012

February is Turner Syndrome Awareness Month.  During February 2012, The Turner Syndrome Society of the US (TSSUS) will launch its second Annual Awareness Campaign: “Celebrating 25 Years and Growing Stronger.”

Turner Syndrome is a chromosomal disorder  that affects one in 2,500 female births. It is where a female is missing all or part of the second "X" chromosome.  As you may already know my daughter Lily is missing all of her second "X" chromosome and was diagnosed with Turner Syndrome at birth

Turner Syndrome girls/women are usually of average intelligence, but have a varying set of other conditions such as:

  • Delayed puberty
  • Heart defects
  • Puffy hands and feet
  • Infertility
  • Kidney, Thyroid and Liver Concerns
  • Hearing loss
  • Frequent ear infections
  • Learning and Social Difficulties
  • Osteoporosis. 
Plus many females with Turner syndrome show common physical traits including:
  • Short Stature (under 5 feet)
  • Many moles
  • receding lower jaw
  • Low-set ears
  • Triangular face
  • A webbed neck
Currently, there are approximately 80,000 women and girls affected with TS in the United States with approximately 800 new cases diagnosed each year.

Unfortunately, many people, including physicians, are not aware of Turner syndrome and often the diagnosis is missed. Half the girls are not diagnosed until their pre-teens or later. Because of some of the medical issues, early diagnosis is critical.  With the help of medical specialists and a good social support system, a woman with Turner Syndrome can live a happy, healthy life

Starting on Wednesday - February 1st - I am dedicating 29 days of blogging to crushing the ignorance of Turner Syndrome in honor of my daughter, Lily.  Please join me, find out more about Turner Syndrome, and pass as much information on as you can to your friends, family, the media, business associates, health care professionals, and even strangers!  You never know whose life you could affect.  Together we can Crush Ignorance of Turner Syndrome! 

The information used for this post is taken from the Turner Syndrome Awareness Press Release, put together by TSSUS for Turner Syndrome awareness month.

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  1. I found your blog via Heidi Ehle's blog ... Lily is beautiful. :) I had never heard of Turner Syndrome before; I am glad I found your blog so I can learn more.

  2. I am new to you through Heidi. I too, have never heard of Turner Syndrome. My grand daughter has Down Syndrome. My nephew's little boy has 18P and my good friend's grandson has William's Syndrome. So many different chromosome disorders but yet they are all the same as "typical" babies. Beautiful, loving and truly gifts from God. Bless you.

  3. she is stunning! Thank you for sharing about TS. I too came from Heidi and needed educated :) my sweetie has DS...we were both greatly blessed with perfectly awesome little girls!

  4. I lost my first baby at 10 weeks due to Turner's Syndrome over 13 years ago. Thanks for reminding me of her. Prayers for your sweet Lily.

  5. Lily is beautiful. Thank you for the info. I look forward to learning more.


  6. I didn't know what TS was until my daughter was diagnosed over a year ago. She is 13 years old. I too am dedicating my month of February to spreading the word! Good Luck and I am looking forward to reading more about your journey.

  7. My 3 yr old daughter has TS. We were lucky that her Dr. did not give up to find what was slowing her growth so much. It took us a year of different tests and just "hoping" she would have a growth spurt. Thank you for posting this. I will read it all 29 days!

  8. my daughters aunt has ts.i will keep all of the girls and women in my prayers that have this bad disease.i hope that the doctors can find out what is causeing so many girls to have this bad disease.may God bless u all

  9. I ran across your blog today, it's great to see that you are helping raise awareness for Turner Syndrome for your beautiful daughter, myself, and other girls like us. I brief overview of your past posts and thoroughly enjoyed you taking the time to share your journey. I know, just as you do, how special your daughter is in that she made it :) I look forward to updates on your daughter, and let me know if you have any questions for someone from who has lived with Turner Syndrome.

  10. Every single one of you bless my heart! Thank you for stopping by to read and share Turner Syndrome awareness month.

  11. Wish I could remember what TV program I saw, with a child with Turner Syndrome. I want to say Law & Order and parents there were having trouble dealing with theirs childs illness. Wish I could remember more about it. Your daughter is beautiful and so are you.
    Kathie R

  12. Thank you for sharing. Now I know.

  13. I had never heard of TS till my daughter was born, they first believed she had TS. Turned out she had DS instead. You little girl is beautiful and I look forward to reading your post all month long!!!
    I also have a blog for my daughter (don't write as often as I would like too but if you would like to check it out. www.kenedyswindow.blogspot.con

  14. Just now seeing this. Count me in! I will help share!

  15. My baby girl's name is also Lily :) Your daughter is so beautiful! I have a niece with TS. She was diagnosed in utero and has a single kidney and was born with a heart defect. She had surgery a few weeks after birth to correct her heart defect, and it was successful, thank God. She is the cutest little elf child ever, and is now 4 years old, and the same size as my almost 2 year old son. She just started growth hormone injections a year ago, and has grown about 3 inches since starting them. Good luck in your fight, little one!! God bless you, mom!

  16. We Love our Ali-Bear! Before I met Ali I had never heard the term "Turners Syndrome", I am glad that there is an awareness month for TS. Ali and my daughter Stella (only a couple months older) are becoming good friends, Ali sees stella and her legs start a-going and Stella books it over to AL... they look at each other and smile and reach for each other! What a blessing Children are and what a sweet spirit Ali has. Thank You God for providing such wonderful gifts to us and trusting us with these beautiful baby girls!

  17. ts is new to me. thanks for your informative post. your daughter is precious! glad deanna linked me here.

  18. I am so glad to have found your blog. We lost a baby girl to turner syndrome jan 23,2014. I was 15.5 wks along. Like you I am now making it my mission to spread awareness of turner syndrome and to have hats,shirt,bracelets made up to sell with the money going to the foundations. I am in Canada but if you want to chat please do.


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