Zoë first met Jane at the Outlook meetings and joined her in the online Saturday Pub Quizzes during lockdown.

My name is Jane Rogers nee Kelshaw. I am 46 years of age. I’m married to Phil who doesn’t have TS. I have a brother called John who does not have TS and his two boys don’t have TS. I am a nurse at my local hospital, part time on the stroke ward.

I was 18 months old when I was diagnosed with TS. They saw under ultraviolet light the white patches and I was having seizures. I didn’t speak till I was 5. Over the years I’ve felt the full run of emotions happy, sad, angry, now acceptance/tolerance. I have met amazing health professionals and fellow TS sufferers/carers that I wouldn’t otherwise have known.

TSC for me. I have had numerous kidney bleeds and embolisations over the years. I’ve had laser treatment for the facial rash when I was 12. I was advised not to have children. We have a dog called Tessa.

I have been a member of Outlook (a group for mildly affected adults with TSC) since the beginning, and Outlook has meant so much; I feel I can be myself as we’re all like one big family.

My advice to newly diagnosed people would be don’t panic! It’s a challenge. Remember that there are other people out there with TSC. You may think you are all alone but you’re not. There are people at TSA that can point you in the right direction for help/support.

https://tuberous-sclerosis.org/information-and-support/contact-our-support-team/

Don’t give up. You may feel like giving up but there are others who understand.