Wednesday, February 1, 2012

February is Turner Syndrome Awareness Month-25 Facts On TS

Together, we CAN "Crush Ignorance of Turner Syndrome!"
The 2nd Annual TS Awareness Month starts February, 2012. Help TSSUS celebrate 25 years by educating 25 people on Turner syndrome and asking those 25 people to tell 25 people.  Our goal is to reach ½ million people with our message! 

In February of 2010 I found out I was pregnant with our second little baby.  Two years ago I had never heard of Turner Syndrome, didn't know what it was, nor did I know how it would change our family (for the better).  Since I was uninformed and ignorant, I thought I would share 25 facts about TS to help crush ignorance about Turner Syndrome.

  1. Turner Syndrome (TS) is a chromosome abnormality that affects only females.
  2. There is no known cause of TS. Maternal age does not affect TS.
  3. TS affects 1/ 2,500 live female births.
  4. It is estimated that only about 1% of fetuses with only one X chromosome survive to term and that approximately 10% of all miscarriages are due to Turner Syndrome.
  5. Cystic Hygromas and Hydrops are associated with TS in utero.
  6. Females with TS are either missing all or part (a percentage) of their second X chromosome. 
  7. Females missing all of their second chromosome are said to have Classic Turner Syndrome. Females missing a percentage of their second chromosome is said to have Mosaic Turner Syndrome.
  8. Females with TS can have congenital heart defects.  
  9. A coarctation of the aorta is one of the most common heart defects.
  10. TS causes an increased risk of aortic dilation, dissection, and rupture. It is key to know the signs and symptoms and seek medical attention immediately. Missing the signs can be fatal.
  11.  Female with TS can have cataracts, strabismus, amblyopia and ptosis
  12. TS causes short stature and the average adult height is 4'8", but growth hormones can increase final adult height. 
  13. Early ovarian failure means most females with TS can't have child of their own. IVF, with donor eggs, is an option for some women without heart complications.
  14. Estrogen replacement therapy is often started when girls are 12 or 13 years old to start puperty.
  15. Lymphedema or swelling (webbed neck, edema of hands and feet) is one of the classic signs of TS
  16. Although TS is the only chromosome abnormality that does not cause mental retardation, females can have issues with nonverbal, visual-spatial processing learning disabilities.
  17. Frequent ear infections is a symptom and they can cause hearing loss. Mild malformation of outer ear and low set ears is also a sign.
  18. A high-arch palate (narrow maxilla) exists in some females.
  19.  An ultrasound of the kidneys should be performed to rule out horseshoe kidneys. UTI's is common and a VCUG is commonly done to rule out reflux of the kidney.
  20. A low hairline.
  21. Small fingernails and upturned toenails.
  22. Diabetes and Thyroid issues
  23. Obesity
  24. Autoimmune disease-Hashimoto's disease, Celiac disease, Juvenile Rheumatoid Arthritis
  25. No two individuals will share the same symptoms. 

Caroline isn't crying over Turner Syndrome, she is crying because of the ignorance and lack of knowledge of the syndrome.  Please help us spread the word on Turner Syndrome.  You may not be affected by TS, but you never know when your knowledge on TS might help others get the medical attention they need. 

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