We recently asked the TSC community to share their experiences of TSC and mental health challenges. Rae, who is aged 21 and was diagnosed with TSC when they were one, took the time to tell us their story:
“Hi, my name’s Rae, and I’m a 21-year-old person with TSC, and am one of the 90% of people with TSC who also have TSC-Associated Neuropsychiatric Disorders (TAND).
I was diagnosed with TSC at age 1 after the development of infantile spasms. Thankfully, I have now been tonic-clonic seizure free for 18 years.
The next diagnosis was for autism spectrum disorder, aged 5. Thanks to this diagnosis, I have had support through my education, which has allowed me to achieve my full potential. I am currently studying for a master’s degree in computer science.
At the age of 12, I developed a needle phobia, as a trauma response from a botched blood test.
It was clear from and before this point that I was starting to suffer from anxiety, especially around people. After going to multiple doctors, I was eventually diagnosed with severe social and generalised anxiety disorders.
I spent a couple of years in and out of therapy, before finally being referred to a psychiatrist at around the age of 15 and a half. I was diagnosed with depression, with Post-Traumatic Stress Disorder (PTSD) hinted at, and put on anti-anxiety medication which I am still on.
However, I am determined, and have been slowly working on improving my mental health. I am hoping that one day, I will be able to come off my anti-anxiety medication.
Thank you for hearing my story,
Rae”
