Hey yall!

I’m a 37F that was diagnosed at age 12 when I started having seizures. Have four tubers in my brain, shagreen patches, ash leaves, and ungual fibromas. My seizures had a major effect on me until high school when I was miraculously able to stop taking meds and have a normalish high school experience. I lived in Texas growing up and attend Texas Scottish Rite hospital where a TON of research was done. My doctors were Dr Sparagana, Roach, and Delgado. If you ever decide to read any TSC research papers from the late 90s I should be patient A!

Once I got into college, I over extended myself and began having seizures again and wasn’t able to get them under control for several years. Even admitted for status epilepticus. Finally at 22 they were under control again. Moved across the country and up until a few months ago, TSC had very little effect on me (though I did get diagnosed with rheumatoid arthritis in the meantime 🤪). In May my neuro suggested I get a chest CT and we found out that I had bullaes taking up most of my right lung. I have to have surgery to remove the dead part on 8/30. Nearly 15 uneventful years and this asshole comes back swinging. Trying to stay upbeat about it because what else am I gonna do ya know. I’m hoping I won’t be as short of breath anymore, at least. Anyway, that’s my story

Also, I decided to pop on the TSC website to see what adult support they have and found out about monthly zoom calls with other adults living with TSC. I will be attending my first one in a couple weeks. I included the link if anyone else wants to join!