Turner Syndrome Support Group

Turner syndrome encompasses a number of chromosomal abnormalities, of which monosomy X, is the most common. It occurs in 1 out of every 2,500 female births. Instead of the normal XX sex chromosomes for a female, only one X chromosome is present and fully functional. In Turner syndrome, female sexual characteristics are present but underdeveloped.

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terra 02/22/2018

Our sweet baby girl was recently diagnosed with Turner Syndrome and we are debating on going forward with the HGH injections. Given the statistics of what we’ve been given from the doctor, we are more worried about the risk of cancer growth associated with it.

My question to anyone willing to talk about this is, what is your experience with it if you’ve received the injections? Or do you know anybody who previously showed no symptoms and then developed problems after starting injections?

thank you ahead of time for the consideration of sharing your thoughts, I am so beyond scared to make a decision for my 2 year old for her and even more afraid of it being the wrong one! ❤️

RorieWhitney 04/12/2018

I took growth hormone for many years and it went well; no symptoms after. There was a complication of octave nerve swelling due to my growth hormone being more than doubled at once. I would recommend slowly increasing growth hormone if needed.

ella1234 05/26/2018

Hi my name is aElla and I have turners. Don’t worry about the cancer risks as they always monitor blood levels regularly and I have taken injections of that kind aswell and have had no issues. On another issue also ask about fertility preservation as she will go into premature ovarian failure like I have and you don’t want to weight too long. She is not too young and IVI London can help. Ask about freezing eggs , it can be done under 18 and on the NHS xx

ella1234 05/26/2018

Hi my name is Ella and I have turners. Don’t worry about the cancer risks as they always monitor blood levels regularly and I have taken injections of that kind aswell and have had no issues. On another issue also ask about fertility preservation as she will go into premature ovarian failure like I have and you don’t want to weight too long. She is not too young and IVI London can help. Ask about freezing eggs , it can be done under 18 and on the NHS xx

simplymarss 06/28/2018

i took growth hormone for about 8 years before the doctor told me it wasn't needed anymore. and it's been fine. :)

Stace18 07/03/2018

Hello, I have a 6 yr old who was diagonsed at birth with TS and my husband and I still have not done it just because we feel like that is a BIG step and decision to make her doctor said we could always decide a little later like when she is 8 or 10 of course every doctor is different , but we feel like she is the way God made her and all its going to do is help in height so we want her to be happy with who she is just the way she is so for now we will not be doing the growth treatments ! I wish you the best of luck and I will be praying for your daughter and your family !

SGO 10/09/2018

Hello, I am in a similar situation. Our daughter is 6 and the doctors have suggested removing her ovaries as it may cause cancer. We believe she’s a little miracle and don’t want to make any changes to her body. However the doctors keep stressing on the fact that she will need growth hormones in the future as her heigh is alright at the moment. Our biggest challenge is removing her ovaries. We really don’t know how to explain it to her and are really not sure if it should be removed. If anyone has gone through a similar situation please share your thoughts. Thank you

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