AMLs | TSC Now

In episode 12 of TSC Now, host Dan Klein does a deep dive on the ongoing COVID-19 crisis and its impact on the tuberous sclerosis complex (TSC) community. Throughout the episode he shares resources the Tuberous Sclerosis Alliance (TS Alliance) has developed to support the community during the pandemic, and plays clips from past webinars hosted by the TS Alliance and our partner advocacy organizations. He also interviews two guests to better understand how COVID-19 is affecting both individuals and families and TSC clinics.

First he speaks with Laura Lubbers, PhD (3:50), Chief Scientific Officer at Citizens United for Research in Epilepsy (CURE). Laura’s sister Ellyn is an adult with TSC and was taken to the hospital earlier this month when she developed a fever and later tested positive for COVID-19. Laura shares about what that experience was like and how she helped coordinate Ellyn’s care remotely. Fore more resources from CURE visit: https://www.cureepilepsy.org/for-patients/covid-19-and-epilepsy/.

Next, he speaks to Karen Agricola, MSN, APRN, FNP-BC (21:20), a family nurse practitioner and coordinator at The Tuberous Sclerosis Clinic at Cincinnati Children’s Hospital. She shares how the clinic has adapted care during the pandemic and offers advice on how to stay safe and utilize telemedicine to maintain care.

Dan closes out the episode by playing a clip of TS Alliance President and CEO Kari Luther Rosbeck (37:30), who introduces our TSC Awareness Month of Caring and shares how you can support the TS Alliance throughout the month of May.

Finally, be sure to join us for our next Virtual Town Hall on Friday, May 1: “Accessibility to Treatments During COVID-19,” co-sponsored by the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome Foundation and Tuberous Sclerosis Alliance. You can register now here: https://zoom.us/meeting/register/tJ0of-ipqT4iE9KhuijP08JP9wL3j-_tmRzO

Resources and Links:

All of the TS Alliance’s COVID-19 resources can be found here: https://www.tsalliance.org/individuals-families/covid-19/
Video recordings of previous webinars can be found here: https://www.tsalliance.org/covid-19-webinar-and-virtual-town-hall-recordings/
A schedule of upcoming webinars can be found here: https://www.tsalliance.org/upcoming-covid-19-and-tsc-webinars-and-virtual-town-halls/
A recording of the Virtual Town Hall “TSC/LAM Virtual Town Hall: A COVID-19 Update,” held in partnership with The LAM Foundation, can be found here: https://youtu.be/pPHtFVc4vPs
For COVID-19 resources from our partners at Citizens United for Research in Epilepsy (CURE), visit: https://www.cureepilepsy.org/for-patients/covid-19-and-epilepsy/
A recording of the webinar “Managing Anxiety During COVID-19,” presented by Tanjala T. Gipson, MD of LeBonheur Children’s Hospital, can be found here: https://youtu.be/m4rHD0Zhdpc
A recording of the Virtual Town Hall “Accessibility to Care During COVID-19,” held in partnership with the Child Neurology Foundation and Dup15q Alliance, can be found here: https://youtu.be/-4s4mV_u9g4
To learn how you can get involved in our TSC Awareness Month of Caring visit: https://give.tsalliance.org/campaign/tsc-global-awareness-day-of-caring/c281515

This episode was sponsored by:

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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.

TSC Now

a podcast from the TSC Alliance®

Tag Archives: AMLs

Episode 12: Living with TSC During COVID-19

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