Some of the young women at the workshops
Research doesn't always take place in the lab.
Charities use funding from Jeans for Genes to carry out research amongst their members.
By finding out their thoughts, feelings and experiences, charities can see where there are gaps in support and introduce services where they're most needed.
Workshops for women with Turner syndrome have given them a much more positive outlook on their condition, thanks to Jeans for Genes.
Turner Syndrome is a complex genetic disorder caused when women are missing part or all of their X chromosome. For many women it means they're below average height and are infertile because their ovaries don't function.
They might also be more self-conscious about their body image as they can have a broad chest and low hairline. So you can understand that the effects of Turner syndrome are more than just physical.
Funding from Jeans for Genes allowed the Turner Syndrome Support Society to hold two innovative workshops to identify and tackle some of the psychological difficulties experienced by young women who are affected.
The workshops were an opportunity for them talk about how society often made them feel 'less than' other women. Having Turner syndrome was seen as 'being different' in a negative way.
"Very positive, useful, helpful, and fun day in which we were made to
feel at ease with each other and challenge some preconceptions. Thank
you."One participant's positive reaction
But with the help of consultant clinical and health psychologist, Dr Paul Chadwick, those who took part were encouraged to challenge the ideas of being a 'normal' woman and look at the positive aspects of their lives.
They were also asked to.sign up to the ‘Turner Syndrome More-Than Manifesto’ and identify one practical way in which they were going to positively value the experience of having Turner Syndrome.
Three months after the workshops, 98% of women who attended agreed that the workshops had helped them to view TS more positively.
74% agreed that they were able to be more open about TS to friends, family and work colleagues, and 73% agreed that the workshop helped them to feel less different from women without TS.
Arlene Smyth, the Executive Officer of the Turner Syndrome Support Society says;
The TSSS is now producing booklets for their members so that everyone can benefit from the work so far.