32. Research Junkie

I freely admit that I have taken part in many research projects for TS. I have done one for TS and Diabetes, a couple for TS and cardiology, one for the effects of HRT on bone density, one for TS and liver function and a couple for neurology.
I have had several MRI scans looking at my heart and brain (one that lasted almost two hours- if you have ever been in an MRI scanner you will know how claustrophobic they are!). I have been exposed to unpleasant noises, had to answer some very personal questions, been made to lie still for over two hours while blood pressure cups went off at regular intervals and most exciting of all I had a bone biopsy! Perhaps the hardest thing I have done in the name of research was stop taking HRT for three months to see what effect it had on my heart. I was physically drained by the end of the period.

My friend Lucy once asked me why I felt the need to participate in so many research projects. It is interesting that I got involved in all these research projects shortly after I got involved with a Turners Syndrome support group and was fired up to help out other women with TS in any way I could. I also was aware that many of these research projects were being run in central London, close to where I work, so I felt that at least I was able to get to these places to participate in the research, which many women did not.

But there were two main reasons I wanted to participate in research.

Firstly I wanted to find out more about what positive effects taking HRT has for women with TS. There has been so much negative coverage of HRT and there are many unanswered questions about how effective taking HRT is over a long period. I know many women with TS who have serious concerns about taking HRT. I wanted to help answer these questions as far as I could. I wanted to be able to find out for myself and my friends that taking HRT was worth the possible risks. Taking part in research projects was one way of doing this. For myself I feel that I have received a considerable amount of reassurance from the findings of the research projects I took part in.

Secondly, for me, participating in research projects has helped me view the relationship I have with the medical profession differently. This is the one time where the medical profession is dependent on myself and other women with TS. It is the one time when we have something to offer. It is the one time when doctors are dependent on our good will and co-operation for what they need. It is very easy to feel powerless in the patient-doctor relationship. By participating in research I feel I have at least altered the balance of power. Maybe not a lot but enough to make me feel a lot more comfortable. I have given something back.