Tag Archives: TSC

Episode 5: TSC Kidney Manifestations & Consensus Guidelines for Surveillance and Treatment



In episode 5 of TSC Now, Dan Klein talks to Dr. John Bissler, MD, Clinic Director of the Tuberous Sclerosis Complex Center of Excellence located at Le Bonheur Children’s Hospital, Director of Pediatric Nephrology at the University of Tennessee Health Science Center, and the Medical Director of Nephrology at St. Jude’s Children’s Hospital. They discuss common kidney manifestations of tuberous sclerosis complex (TSC), including renal cysts and renal angiomyolipoma (AML). The majority of individuals (greater than 80%) with TSC will develop some form of renal disease during their lifetime and renal-related disease is the most common cause of TSC-related death in adults, so they discuss the consensus guidelines for surveillance and treatment as it relates to kidney manifestations in TSC. They also discuss ongoing research to discover new treatments for AMLs and renal cysts.

To learn more about the kidney manifestations of TSC visit: https://www.tsalliance.org/about-tsc/signs-and-symptoms-of-tsc/kidneys/

To read about the general clinical consensus guidelines visit www.tsalliance.org/consensus. You can also read about the specific renal guidelines for TSC at: https://www.ncbi.nlm.nih.gov/pubmed/27504842.

Finally, to read Dr. Bissler’s paper on the reduction of post-embolization syndrome visit: https://www.ncbi.nlm.nih.gov/pubmed/11979340.


Episode 4: Educational Issues in TSC and How to Advocate for Your Child in School



In the fourth episode of TSC Now, host Dan Klein talks to Lilian Ansari, MS, Special Needs Advocate, Co-Chair of the TS Alliance of Northern California and Education Parent Mentor. They discuss why she volunteered as an Education Parent Mentor, what types of challenges kids with TSC face in the classroom, and what resources and benefits are available to families under the Individuals with Disabilities Education Act. She also shares what advice she gives to parents as they are preparing for an Individualized Education Program (IEP) meeting, including to record the meeting, take time to review the plan and get everything agreed upon in writing. Finally, she encourages others to volunteer as Education Parent Mentors and provide support in their communities.

If your child is having school issues please call Dena Hook, Vice President of Support Services, at (800) 225-6872 or email her at dhook@tsalliance.org. You may fax documents, such as IEP reports or other correspondence, to Dena at (888) 330-1853.

To learn more about school issues visit: https://www.tsalliance.org/individuals-families/school-issues/

To learn more about the Education Parent Mentor Program and to apply visit: https://www.tsalliance.org/engage/volunteer-opportunities/educator-parent-mentor/


Episode 3: The 2019 International TSC Research Conference



In the third episode of TSC Now, host Dan Klein, Director of Digital Platforms for the Tuberous Sclerosis Alliance, talks to the two co-chairs of the 2019 International TSC Research Conference: Changing the Course of TSC. Continue reading Episode 3: The 2019 International TSC Research Conference