Vicky Mason writes about how celebrating the TSA’s 40th anniversary also means she celebrates 20 years involvement with the charity.
'I just found out I had TSC in 1997 after having the condition since birth which I didn’t know about. My late mother never ever told me about it and it was ironically the year after her passing that I found out about having the condition.
'It was all down to having what my GP described as having a 'wart' on my small toenail - of which I now know is an ungal fibroma. He referred me to the skin clinic at my local hospital in Glasgow where the specialist then went on to tell me that it was part of a condition called Tuberous Sclerosis. Just trying to pronounce the condition was a mouthful and then found out to make it a bit easier it was shortened to TS (TSC). I thought and some people I have spoken about it today, it was the same as the condition tuberculosis as the two sound the same but they’re not. I had no idea what TS was and was in a bit of a state when I did finally find out that the condition was genetic and through time I found out that other members of my mother’s family also had the condition including my grandmother.
'I apparently had an uncle with the condition and he had twin boys one of whom sadly died of a brain tumour and both my sisters were identical twins. I say 'were' because one of my sisters also died with a brain tumour at 17 years old. Things like this were never talked about in my mother’s day and I think everything was swept under the carpet so to speak.
'The first person I spoke over the phone was a lady called Janet Medcalf and I remember her having a very soothing voice as I was in floods of tears at not knowing what this was all about and she seemed just to know the right things to say. Through time everything fell into place my epilepsy, my extreme shyness, my being socially reluctant (not wanting to be around people I didn’t know) the skin rash, the nail growths, the lumpy skin on my back. I noticed my sister had all these and I used to think that it was because we were sisters that we just looked the same. My mother at one time tried to pass off the facial rash as 'acne' and used to take me to doctors to get skin creams but I now know this rash never fully leaves you maybe reduces slightly with treatment but never actually leaves you.
'I wanted to become involved with the TSA right away I already had a five-year-old son William (now 24) and I was more or less worried about how it would affect him with it being genetic. I was put in contact with the then regional TS organisers Nessie & Craig Garrett. I would send letters out to members letting them know about meetings and attend the annual Scottish meetings began selling items to raise funds for TSA which then later developed into a tombola where I charged £1 per ticket and if your ticket was picked you won a prize and I’m still doing that to this day as I hold a tombola/raffle at the annual Scottish Get Togethers in Glasgow each year.
Later when Craig and Nessie stepped down I became an organiser along with TS members Kathryn Morris and Hilda Reynolds in Scotland and now I’m a volunteer fundraiser - well, I like to think I am if you allow me to say that! I also take a stall at the Annual Glasgow Christmas Charities Fayre in the City Chambers in Glasgow each year where I sell the TS Christmas cards along with other items to raise funds. I have been doing this for the past few years - I can’t recall exactly how many but think this was my sixth year doing it and I’ll probably be there again this year. This, too, I started doing with Craig and Nessie think they asked if I would like to go along to help out one year and I said yes and I remembered it from then and asked at the time I think it was Anne Carter who was still head of fundraising if I could do it again. I have a lot to be thankful to Nessie and Craig for for giving me the opportunity to help and establish myself on the volunteer fundraising side of things for the TSA.
The fundraising gives me a 'buzz' just to know that I am helping others who have TS more severely than I do and to know that the money I’m raising will go towards helping with research and other TS services, the services TSA Advisers provide, professionals etc. I have recently volunteered also in the Everolimus study for TSC in Glasgow. Maybe it's too late for me but this will go towards research in hopefully finding a cure one day for TSC.
'My only regret is not having more children. When I found out about the TSC my husband James and myself were looking forward to having more children but in the end decided against it for fear of the unknown. We did a lot of soul-searching beforehand and it took a lot of tears and tantrums before deciding not to go ahead with it. William has turned out to be a fine young man though. He has travelled the world with his job to places such as Singapore, San Francisco, Paris and Germany.
'I look to future and try to be positive with TSC and hope it has stopped with me and goes no futher. William knows about TSC I will not be ignorant about it with him as my mother was with me. So I wish everyone at the TSA Happy 40th anniversary and here’s to the next 40 years and hopefully by that time - a cure!!'