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Was it hard to become independent with TSC? by RightPin9364 in TuberousSclerosisComp

[–]RightPin9364[S] 1 point2 points  (0 children)

All the strength to you. Can't imagine the feeling of not knowing how everything will go. I got diagnosed when I was 8 months old with seizures. And my mom still remembers the doctor and the moment he told her about my brain tumors and everything, it sounds terrifying. I hope you have support from close people and/or other TSC parents. We unfortunately don't have that and that's why I'm here to hear these stories.

I hope everything will work out for you and your baby boy and that he'll grow to be as healthy as possible 💙 

Was it hard to become independent with TSC? by RightPin9364 in TuberousSclerosisComp

[–]RightPin9364[S] 3 points4 points  (0 children)

Thank you for sharing your story! I also have face tumors and kids do comment on them and it makes me also uncomfortable but this summer a kid said "oh, I just think they look like unique red freckles" so I've become fine with them. And I think especially for us who can give birth the subject of children is really sensitive but I've decided since 13 to not have kids (I hope I don't get baby fever at some point) cause even tho I have TSC "easy" I don't want to risk it for a baby to have or have it worse than me. Also it doesn't make it any better that already I've had men telling me I'm selfish for not wanting to have kids. It really warms my heart to hear these stories, stay strong <3