Mary Savage

I came to know about the TSA when my son, Gary, was diagnosed with TS, writes Mary Savage. 

Of course I was devastated that he had this condition and a friend, Marion who was very supportive at the time helped me to find some family support from people who were going through the same as what I was going through at the time. 

We found the TSA on a website and it was through this that I came to meet the dear Janet Medcalf who was of tremendous support to me and who I rang many times in my times of need. 

Later on I was introduced to other TSA family support members who had formed the TSA in 1977. 

I was assured that I could contact them when and if I needed any advice or information. 
Around this time the TSA was organising a family weekend at the share centre in Enniskillen, County Fermanagh, Northern Ireland, and they invited us to go. 
The weekend offered a variety of activities for families including a visit to the caves and boating trips. There was additional family support for the kids. 
The weekend also provided us with information on living with and managing TSC, from key speakers from within the TSA.  

It turned out to be a very productive weekend indeed and one of which I have very fond memories. 

I met Ann Hunt and Janet Medcalf at that weekend in the share centre. I was seated beside them at lunch and had a lovely chat with both of them. Of course I had spoken to Janet via phone and they were both extraordinary women. It was wonderful to chat with them about their lives, their own personal experiences and their work within the TSA. 

My contribution is that I did a TSA fundraiser some years back. And I spoke at the recent TSC Study Day in Belfast Hospital. 

I hope that the TSA will continue to go from strength to strength and that scientific research will find an easier way to manage the condition - for example, Everolimus seems very promising.