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Points for Reflection

1. How would you support a patient to address reproductive options?

2. Consider the issue of not feeling like a woman ďbecause of what we lackĒ. How could you as a health professional ensure that Collette is treated with respect and dignity in a clinical situation?

Activities

Investigate using the relevant websites, the types of treatment that might be offered to young women who have Turnerís syndrome to treat i) short stature and ii) fertility. What are the potential adverse effects of these treatments?

Quotes

" I am never going to achieve any potential that I might have because of my shape and size which is due to Turnerís."

" At 16, realising the meaning of the infertility issue was difficult. There was no one to talk to or give any support. I remember crying on a bus on the way home from a routine hospital visit."

"...like every condition every generation benefits from more knowledge and better treatment."

"TS women do not feel like they are whole women because of what we lack."

Further information

Turner syndrome support society website: http://www.tss.org.uk/

Information sheets from Guyís and St Thomasí Hospital for professionals and patients and families.

UK National Library for Health, Genetic Conditions Specialist Library website: Turner syndrome briefing

US National Library of Medicine, Genetics Home Reference: Turner syndrome

UK Intersex Association: http://www.ukia.co.uk/

The Child Growth Foundation website includes information and a number of booklets (available to download) on growth disorders including Turner syndrome.

Antenatal Screening Web Resource AnSWeR/ Ė has other personal experiences of Turner syndrome.


Location: The Stories
Transcript

You can download the full transcript here

Turner Syndrome: Colletteís story
A condition caused by an X chromosome imbalance and its impact on a young woman

I was diagnosed around 10-11 when my parents were worried that I was small for my age and pushed for investigations. I had a day of very unpleasant tests being on a drip which I hated at a Childrenís Hospital. I was told by my parents, a very much generational thing. My parents and I were told that I was going to be short and not have children. I was discharged to the care of my GP after I had received hormone treatment to develop secondary sexual charecteristics.

I do believe that Turnerís has affected my life and it does get me down. I have suffered bullying both at school and in the workplace. I am never going to achieve any potential that I might have because of my shape and size which is due to Turnerís. I have a degree and I am doing a low grade clerical job within the Civil Service. If you do not fit the mould, you may as well forget it and I am not going to get the reports to allow me to get on and am at a disadvantage in the workplace because people will not, when it comes down to it, take me seriously or believe that I am capable of managing staff. I feel that I am fighting a losing battle when it comes to walking in that interview room.

At 16, realising the meaning of the infertility issue was difficult. There was no one to talk to or give any support. I remember crying on a bus on the way home from a routine hospital visit. I was not allowed to grieve or be upset or hurt by my parents.

To be put in touch with other TS women in my home town and to have emotional support and help. Unless they are part of the TSSS they will not be known about. I can get on the phone but it is not the same as face to face. I would like clinics both paediatric and adult to put people in touch with each other. Parents may like to meet up and speak to someone who has the condition. When newly diagnosed clinics should be aware of the TSSS and give number etc. The book and DVD produced by the society should be available for parents to borrow from the clinic.

My generation had no TSSS to turn to and like every condition every generation benefits from more knowledge and better treatment. Growth hormone was not available and it would have helped to know that the difficulties that I had growing up with maths and sport came from Turnerís. My parents may have benefited too from the knowledge that is around today. There will more developments that will allow even more girls to have their own families. My generation is the first one to benefit from IVF. I have been able to cope with IVF because it was either going to work or not.

I have been dealt with very clinically and very unsympathetically. They said she is going to be short and canít have kids and needs to take tablets for the rest of her life.

TS women do not feel like they are whole women because of what we lack. Boyfriends, if at all come along much later. We do not get wolf whistles in the street or paid compliments on our appearance very often. What I would like to happen in clinics today for the girls is to have a sympathetic female ear to talk to other than their mum so that they can talk over issues that they may feel too embarrassed to bring up and discuss treatment with particularly during the teen years. They are the worst for TS women and they need all the help they can get.

Later, Collette adds these reflections in relation to the discussion of the psychological impact of TS on her:

I feel that I have had everything taken away from me. Lack of fertility is very hard to live with and many TS women have to find fulfilment in other ways.

I thought at least with having a degree, I could look forward to some sort of career which would have helped.

Because of "The Curse of Turners" - looks and short stature and not being taken seriously, it is not going to happen.

Instead I have had to suffer bullying and lack of understanding, which has eaten away at any self-esteem I have had - lack of it is a common problem in TS and I have had to take sick leave ( I am on my third bout now) because of it.

I am finding it very hard to cope.