Tuberous sclerosis - any positive stories?

[Lmox]

Hi, a 29 week scan detected two tumours in my baby’s heart - we’ve been told this could indicate tuberous sclerosis. We are awaiting further investigations but naturally I have gone into a spiral and have been looking up anything and everything to do with this disease on the internet.

I’m devastated at the idea that our little boy might have a difficult life ahead of him and I’m so anxious about what it will mean for our future. I feel really hopeless and miserable right now and was hoping someone would itch experience of this disease (either sufferers or parents of) could offer me some positive outlook.

Hii! I am a teen with TSC and have tumors on my brain and kidneys. I am so incredibly lucky to come out on the milder side. This disorder rarely affects my daily life, just that my immune systems isn’t the best and I miss quite a lot of school due to me being sick. Other than that, it’s kind of a cool fact I share with people! If your child does have TSC, they will likely develop educational and mental problems throughout their life. I’ve suffered with staring spell seizures when I was little due to TSC but with medication, I grew out of them within 6 years. Once COVID hit and I was going through puberty at the time, I got diagnosed with Depression, Anxiety, and Insomnia. This was predicted by my doctors. I am receiving a neuropsych eval soon for a possibility of ADHD. I know this seems like a lot, but having TSC has been one of the hardest, but coolest things ever. I know so much more about health and the medical field than I ever did my peers. I mentally advanced so much faster. I persevered and am living a fruitful life. I actually just had an MRI over the weekend! Hopefully this gives some insight. I wish you all the luck with your baby, I know they are beautiful.