Emma's Turners Syndrome Page

This bit is for anyone that wants to know about Turners Syndrome. Not a lot of people know about TS, so I'm going to try to explain in brief and without all the technical terms what it is and what its like to have TS. I would like to start by saying TS is not a disease and it is not hereditary.

I would first like to get rid of one of the long-term myths that has been closely associated with TS for years. It has been believed by people for years that TS girls are in a way "mentally retarded" or hard of learning. This, in quite a few cases, has lead to many TS girls being aborted, having been told the facts by doctors who don't fully understand themselves what Turners is about. I can very definitely say that, knowing a few TS girls myself, we are certainly not hard of learning. There are many TS girls I know that are grade A students or in top sets at school. There can be a few cases of TS girls being hard of learning, but not each and every one of us are. It will depend on the extremity of Turners they have, as it can affect some of us more than others. I hope that has cleared that myth a bit, and means less TS girls are aborted. Turners Syndrome Camp

In many cases, the problem is that there is not enough awareness of Turners which can lead to facts given out being wrong. Due to the facts being wrong, and the fact it is called a syndrome, people sometimes associate it with something totally different than it actually is. At the end of the day, you never know how or in what way a Turners girl has been affected until you actually meet them. The best way is to get in contact with the parents, or a Turners girl themself, to find out what it is like to live with, or be a Turners girl.

Turners Syndrome affects only girls and basically is a growth hormone deficiency; anyone that has it can't grow properly and has to have a daily growth hormone injection to help them grow as close to normal as possible. Here is a list of symptoms of TS. Girls with TS can have any of these symptoms but not necessarily all of them.

Puffy hands and feet
Webbed neck (which is a larger than normal size neck)
Broad chest
Low hairline
Increased carrying angle of the elbows and other features
Droopy eyelids
Spoon shaped, small or square nails
Short fourth toe and short fingers
High roof of the mouth
Hearing problems
Short sightedness
Moles
High blood pressure
Kidney and urinary problems
Thyroid problems
Small lower jaw
Diabetes
Coeliacs
Behavioral problems and
Learning difficulties

Now you know a bit about what TS involves I am going to try and explain what it is like to have Turners Syndrome.

I have known from birth that I have had Turners Syndrome as when I was born I had puffy hands and feet and a webbed neck. This aroused the doctors suspicions that I had TS as the doctor was a specialist in its diagnoses. I had a blood test to see what was wrong and this then took a week but it soon confirmed that I had Turner Syndrome. Once my mum and dad found out I was referred to Great Ormond Street Hospital. When I was 3, I was prescribed growth hormone injections, which my dad gave me each night in my leg. I was regularly, attending the clinic for people with Turners Syndrome at Great Ormond Street Hospital with Dr Richard Stanhope. Here I was weighed and measured to check spine growth, height growth and later on skin thickness. I also had a blood test every year to check a range of things.

Now I'm 4"10/11. I have stopped growing with the injections so I have stopped taking them. I have to have tablets with oestrogen to replace a hormone that is missing.

Having Turner Syndrome hasn't affected me a lot apart from having to take tablets and injections and the odd comments about my height. I get on at school and am like any normal person at the end of the day.

I will regularly keep going to the hospital appointments so if anyone would like to ask me about what they do or how I got on then you can just send me an email here

Thanks for taking the time to read this hope it's been informative.

Published on: 2005-03-18 (2850 reads)

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