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About this Community

About this community

The Tuberous Sclerosis Support Community connects everyone affected by tuberous sclerosis complex for support and inspiration. This community is sponsored by the TSC Alliance, an Inspire trusted partner.

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New to TSC and need help
Parents, grandparents and caregivers of children with TSC
Adults with TSC
Teens with TSC
Siblings of people with TSC
Features and symptoms
Surgeries, medications and treatments
Genetic issues
Educational issues
Clinical trials
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New
New reply March 29, 2024 • 7:21 AM

Hello! My name is Steph Shuff, and I am a writer working here at Inspire. Every month, I help to write, edit, and publish our Monthly Dose newsletter, a monthly email that highlights articles from ac ... Show more

StephShuff133 replies47 Reactions

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New reply February 14, 2024 • 8:40 PM

Hi all! I have a beautiful 6 month baby girl. She is meeting her milestones right on time. I am worried about TSC. I do have PPA, but feel concerned that she may have TSC however, no one, including ... Show more

Mamaoftwo375 replies0 Reactions
New reply December 21, 2023 • 4:00 AM

My child has growing AMLs in the kidneys. I was reading about cryoablation and radiofrequency ablation to stop or delay the AMLs from growing. Does anyone know of a USA provider who does this? Or has ... Show more

maybearsip8 replies0 Reactions
Posted September 13, 2023 • 7:00 PM

As early as today, our Dear Colleague champions, Reps. Raskin and Fitzpatrick, will offer an amendment on the House floor to the FY24 Defense Appropriations Act to increase funding for the Tuberous S ... Show more

rog31460 replies0 Reactions
New reply March 16, 2024 • 7:36 AM

Dear Members, Many of us have been involved in clinical trials, or have considered enrolling in one, or have supported someone who has. At Inspire, we believe that all of us, as patients and caregiv ... Show more

Brian432 replies30 Reactions
New reply December 03, 2023 • 5:22 PM

I have a son with TS that has had a lot of rage issues where he attacks us. I is going on Risperidal which helped a lot. But lately he has gotten rages again and several times a day he is attacking u ... Show more

fatherofm4 replies0 Reactions
New reply February 18, 2024 • 3:10 AM

My daughter is 5 almost 6 and I've noticed these spots for a while. It's summer time so as her skin has tanned they've just been in the forefront of my mind more. She had probably at least 5 randomly ... Show more

KV3254 replies0 Reactions
New reply September 30, 2023 • 3:12 AM

With healthcare costs on the rise in the United States, many of us are finding treatment to be more expensive. Sometimes insurance coverage, when available, has changed. Have you encountered higher p ... Show more

Brian173 replies38 Reactions
New reply May 03, 2023 • 7:06 PM

After my daughter became aware of all the information about her illness, she found out about her illness via the Internet..and this made her sad, as she sometimes cries out of fear that something mig ... Show more

mazen2 replies2 Reactions
New reply November 12, 2023 • 7:27 PM

Hi im new to this and my daughter name is Ba'Leigh and she was diagnosed with TSC i found out right after i gave birth april 14,2022 and she stayed in NICU for 2wks and she came home and been seeing ... Show more

Erica_BaLeigh4 replies1 Reactions