Kellie, (October 2014)

My name is Kellie. I was diagnosed with TS at the age of 2 ½ years of age. I used to experience “staring” turns as a child, which I later grew out of.

Over the years I have had about 15 lung collapses due to lesions on my lungs. I had a pleuradesis (the gluing of the lung to the chest wall so they can’t continue to collapse) on both lungs, and so far, I haven’t had any further collapses.

I have also had a kidney removed due to a tumor that was growing inside and outside the right kidney. Fortunately, I don’t have seizures, but have had many lung problems throughout my life.

I did experience some learning difficulties as a child and was never considered to be a top student, but my biggest downfall was always at exam time, when panic cut in and I would forget everything. I have always been a very nervous person, which made school more difficult for me.

As I got older, I tried to find out more information on TSC from GPs that I had visited and they all used to say to me that they hadn’t heard of TSC since med school. I began to feel as though the only information I would find out would be through experience.

I am now 37 years of age, and have led a relatively normal life. I was unable to work for approximately 10 years due to recurring setbacks connected with TSC, but now I currently hold down a full time job, which I have been at for the last 2 years, and have responsibilities just like everyone else. I have never married or had children, but my life is just as busy as everybody’s around me.

No one else in my family is affected.

When I attended an ATSS (now TSA) Seminar Day it was the first time I had ever met anyone else that has TSC. For the first time I was in a room of people who understood my condition and welcomed me like I was part of their family.

I highly recommend anyone that has TSC becomes a member of the ATSS (now TSA). It is great to meet people who understand what we deal with each day, and they give you all the support you need. Being a financial member also funds new research which wouldn’t be able to be done without the support from members.

Becoming a committee member of the ATSS (now TSA) has been a very important step for me. It has opened so many doors for me – not only for medical information, but for building new friendships and a new social life.