Advertisement

Tuberous Sclerosis Alliance

Tuberous sclerosis support group and discussion community

Inspire has 891,177 Members, 4,153 of whom are part of this community.

Join Inspire

Explore communities

REFINE BY
By posting, you will automatically become a member of this community.

Sort Results By

Tuberous Sclerosis Alliance

Hello, everyone!

Radha_Inspire's journal

Radha_Inspire

hello-everyone-97

200208

  • 98 Replies

Hello everyone! My name is Radha and I am the digital editor at Inspire. We’d like to share some news about an editorial initiative that we hope will be of use to you. Your community is a space where you can express your thoughts, seek support, and share information with fellow members, and will, of course, continue to be. My goal is to take cues from your discussions, your questions ... Read More

Tuberous Sclerosis Alliance

What is ARC and can it help with medical bills?

In: Parents, grandparents and caregivers of children with TSC

dugganp

what-is-arc-and-can-it-help-with-medical-bills

200208

  • 0 Replies

Just read a recent reply to someone asking about bills and they mentioned ARC? My granddaughter has been treated for TS at Stanford in CA but we have not been able to get any medical assistance for her and bills for being pro active have become overwhelming. Does anyone out there know anything about ARC and has it been of any assistance with medical bills? Appreciate your help ... Read More

Advertisement

Tuberous Sclerosis Alliance

INSYS trial of CBD in patients with refractory infantile spasms

In: Announcements

TSCclinicliaison

insys-trial-of-cbd-in-patients-with-refractory-infantile-spasms-1

200208

  • 0 Replies

Insys Development Company has an ongoing trial of a synthetic cannabidiol product in patients between the ages of 6 months and 36 months who have either not responded to ACTH and vigabatrin or have relapsed. The study will involve 2 overnight video-EEGs 2 weeks apart. All patients enrolled will receive drug and there is a potential to enroll in a long-term safety study (1 year) if ... Read More

Tuberous Sclerosis Alliance

bills

In: New to TSC and need help

gammykaren

bills-2

200208

  • 7 Replies

My grand daughter is 14 months old, she has TSC. She is on Siribil (I think) . She has not had a seizure in 6 months then the other night she had a LONG BAD one, or a series of them that lasted almost an hour, she was rushed to ER and they gave her another med that stopped it fast. How do families deal with the bills from the 15k a month for the med and hospital trips and specialist ... Read More

Tuberous Sclerosis Alliance

HR 2646 Bill Impacts Our TSC Community

In: Announcements

captainhook

hr-2646-bill-impacts-our-tsc-community

200208

  • 0 Replies

Kathy Kingston our Dependent Adult Transition Resource Coordinator (DATRC) for Nevada was asked by Rep. Cresent Hardy to service on a Round Table to discuss HR 2646, the Helping Families in Mental Health Crisis Act of 2016. This bill impacts and is important to families with TSC across the country. TSC Associated Neuropsychiatric Disorders (TAND) is something many of our TSC community ... Read More

Tuberous Sclerosis Alliance

Pokemon Go and the gamification of health

John2's journal

John2

pokemon-go-and-the-gamification-of-health

200208

  • 437 Replies

Dear members, Like many, we’ve been watching the phenomenon of the Pokemon Go app, and not only many of our employees and friends are actively catching Pokemon, but several Inspire members have recently shared their experiences about how this has positively impacted their health. The game, as I suspect many of you know, allows players to use their mobile devices to explore real-world ... Read More

Tuberous Sclerosis Alliance

Kidney Biobsy

In: Surgeries, medications and treatments

Cip

kidney-biobsy

200208

  • 7 Replies

Hello to all, I am wondering if anyone out there took a kidney biopsy from a kidney that has angiomiolypomas. If you did were there any after effects? Did your kidneys bleed? i am trying to "locate" my gene, so far I have come up as NMI no mutation identified, I was wondering if a kidney biopsy is a risky procedure. Please share your experience ... Read More

Tuberous Sclerosis Alliance

Help! My daughter has TSC, we are running out of resources to care for her

In: Parents, grandparents and caregivers of children with TSC

Kekepet

help-my-daughter-has-tsc-we-are-running-out-of-resources-to-care-for-her

200208

  • 3 Replies

At 2 months she started having siezure evryday upto 15 times per day, forward to 4month MRI shows She had TSC...luckily for my family i was working and living in a more advanced country ( Abu Dhabi in UAE). She had better medical care for her condition with access to the various medication she had tried but not working for her siezures.. like phinobab, vaproic acid, ACTH, ketogenic ... Read More

There's more to see...

Join many others who understand what you're going through and are making important decisions about their health.

Join Now Already a Member? Log In