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Personal Stories

Premature Sexual Maturation (PSM)

As a child Shelly was diagnosed with Premature Sexual Maturation, but to her this is now a thing of the past. Shelly likes to look to the future, and has kindly written about her life now.

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Growth Hormone Deficiency (GHD)

Before I started school, I did not know that there was anything wrong, as in those days there were no nurseries to go to for me to compare. I only had three cousins, two of whom were younger, so again no clue of anything wrong.

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Sotos Syndrome

We had known since Sarah was a 28-week foetus in the womb that there was fluid in the ventricles of her brain. Amniocentesis blood results suggested Turners Syndrome mosaicism: this was proved incorrect after birth, following further blood tests.

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Turner Syndrome

Our family has held membership with the Foundation for over 25 years.

Allison was born with Turner's syndrome, but was not diagnosed (by an astute school doctor) until she was six, despite frequent consultations with various members of the medical profession; despite ear and digestion problems; despite sleep disorder; and despite the typical fall-off of growth. By some stroke of good fortune, via a TV programme, we discovered the CGF, and finally received the support and information we so desperately needed.

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RSS/IUGR/SGA

I can remember thinking and worrying so much about the future. I thought it might be helpful as the mother of an older boy to share with you his progress now. Tom is now fourteen years old. He has just about stopped growing and is now 5ft 1inch tall. I mourn his lack of height, wishing he were taller, wondering if only he had been a girl perhaps it wouldn’t matter quite so much, and I still worry, as all mums do, about the future.

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Bone Dysplasia

Although, I am supposedly of average stature, I think that we can always pinpoint the things that make us unique, that are not always considered quite ‘OK’ with the rest of the world. My ‘difference’ is to always have been the ‘short, fat girl’ and for others it could be the lad with the big ears or even the Muslim girl with the funny scarf. But, unfortunately, whatever difference we may have, it is usually the visible ones by which we are judged.

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Smiling kid