44.The needs of parents and the needs of women with TS...

As I began to indicate in post 40 below, the needs of parents of girls with TS and the needs of women with TS are often quite different. This is something which causes a considerable amount of tension, and one of the main reasons why I am not involved with and have no desire to be involved with either of the two support groups connected to TS in the UK.
Parents often joint a support group after their daughter is diagnosed with TS (this includes prenatal diagnoses). They are usually looking for practical information about TS, usually about medical treatment and educational support. Some are also concerned that their daughters get to meet other girls with TS. While some parents remain involved with the supports groups over a long period, in many cases the involvement is temporary, Once the parents have the information and support they require, there is no further reason to be involved.
Most women with TS get involved support groups because they are looking for emotional support. They want to form friendships with other women. They also need practical support with issues such as employment.
However there are some even more serious issues in the way that parents of girls with TS and Women with TS approach the condition. Indeed there can be major differences.
As I have discussed below, finding out that their daughter is infertile can be incredibly difficult for some parents. In spite of their best intentions they can project feelings such as distress, disappointment and guilt. These feelings can be very quickly picked up by a girl/woman with TS and compound her own feelings.
In addition parents can be unnecessarily protective of their daughters. I have seen several cases of this up close! While this is well intentioned this can have a serious effect on the self esteem and independence of the daughters.

There is finally the issue that parents tend to see that TS is only a condition that affects their daughters until late adolescence. They can have difficulties understanding the continuing medical, not to say practical issues their daughters will face.
This is not to denigrate parents of girls and women with TS- I have been fortunate to meet several wonderful parents. But it is important that this issue is acknowledged.

It would be interesting to see what a national support group which was headed by a woman with TS would be like. All I can say is that I am grateful every day that I am involved with a group of wonderful women, who just happen to have TS