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What is Tuberous Sclerosis Complex?
What is Tuberous Sclerosis Complex? administrator 1 Views • 2 years ago

Early diagnosis of Tuberous Sclerosis Complex can help manage the condition better and reduce its complications. Kokilaben Dhirubhai Ambani Hospital, Asia’s only TSC clinic, promotes global awareness of TSC and is equipped to assist patients in managing this disorder better. For more information and appointments, call 022 4269 6969. #TSCGlobalAwarenessDay
Profile of everolimus in tuberous sclerosis complex - Video Abstract ID 91248
Profile of everolimus in tuberous sclerosis complex - Video Abstract ID 91248 administrator 3 Views • 2 years ago

Video abstract of Review paper “Profile of everolimus in the treatment of tuberous sclerosis complex: an evidence-based review of its place in therapy” published in the open access journal Neuropsychiatric Disease and Treatment by authors Capal and Franz.

Tuberous sclerosis complex (TSC) is a relatively rare genetic disorder, affecting one in 6,000 births. Mammalian target of rapamycin (mTOR) inhibitors, such as everolimus, which have been previously used to prevent solid organ transplant rejection, augment anticancer treatment regimens, and prevent neovascularization of artificial cardiac stents, are now approved for treating TSC-related manifestations, such as subependymal giant cell astrocytomas and renal angiomyolipomas. The use of everolimus in treating subependymal giant cell astrocytomas is supported by long-term Phase II and III clinical trials. Seizures are a common feature in TSC, occurring in up to 96% of patients. While mTOR inhibitors currently do not have regulatory approval in treating this manifestation, small clinical studies have demonstrated beneficial outcomes with everolimus. Further evidence from a forthcoming Phase III clinical study may provide additional support for the use of everolimus for this indication. Also, there are no approved treatments for TSC-associated neuropsychiatric disorders, which include intellectual disability, behavioral difficulties, and autism spectrum disorder, but preclinical data and small studies have suggested that some neuropsychiatric symptoms may be improved through mTOR inhibition therapy. More evidence is needed, particularly regarding safety in young infants. This review focuses on the current evidence supporting the use of everolimus in neurologic and neuropsychiatric manifestations of TSC, and the place of everolimus in therapy.

View the review paper here: https://www.dovepress.com/prof....ile-of-everolimus-in

Elizabeth Thiele, MD, PhD Director, Herscot Center for Tuberous Sclerosis Complex
Elizabeth Thiele, MD, PhD Director, Herscot Center for Tuberous Sclerosis Complex administrator 2 Views • 2 years ago

Elizabeth Thiele, MD, PhD Director, Herscot Center for Tuberous Sclerosis Complex
Herscot Center Conference Welcome Video
Living with TSC: Flor's family vacation
Living with TSC: Flor's family vacation administrator 3 Views • 2 years ago

Flor is a child affected by Tuberous Sclerosis Complex (TSC), a rare disease that causes non-malignant tumors to form on vital organs of the body. See how his family copes with his condition as they go on holiday.

©Novartis 2014
Research Study Helps Family of Patient with Tuberous Sclerosis Give Back
Research Study Helps Family of Patient with Tuberous Sclerosis Give Back administrator 10 Views • 2 years ago

http://www.cincinnatichildrens.org/clinicaltrials

patient: Abby Blevins
condition: tuberous sclerosis

Tammy Kouns knows she can't change the fact that her daughter, Abby Blevins, has tuberous sclerosis. What she can do, she says, is participate in research that may someday lead to a cure. Kouns says it's important to her to be involved in studies at Cincinnati Children's because she hopes for a better treatment and peace of mind for families like hers.

Tuberous Sclerosis Complex (TSC): You are not Alone
Tuberous Sclerosis Complex (TSC): You are not Alone administrator 0 Views • 2 years ago

Inludes a description of Tuberous Sclerosis (TSC) and the stories of several Australian families living with TSC.
Produced by The Australasian Tuberous Sclerosis Society (ATSS). Find out more www.atss.org.au

Steve Chung, MD: CBD In Tuberous Sclerosis Complex
Steve Chung, MD: CBD In Tuberous Sclerosis Complex administrator 1 Views • 2 years ago

Findings of an interim analysis of the phase 3 GWPCARE6 open-label extension trial (NCT02544750) of GW Pharmaceuticals’ cannabidiol (CBD; Epidiolex) were accepted for presentation at the American Academy of Neurology (AAN) 2020 Annual Meeting that demonstrated the therapy’s well-tolerated profile in patients with tuberous sclerosis complex (TSC) across a long-term treatment period.

Adverse events (AEs) were documented in 93% of patients, with 15% experiencing a serious AE, and 6% discontinuing due to AEs. The most common AEs, occurring in 20% of patients, were diarrhea, seizure, and decreased appetite, which were observed in 42%, 22%, and 20%, respectively. There was 1 death in the study deemed unrelated to treatment. The authors also noted that elevated alanine aminotransferase (ALT)/aspartate aminotransferase (AST) more than 3 times the upper limit of normal were reported in 8.5% (n = 17), with 12 of those patients on concomitant valproate.

To gain some outside perspective on how these data were interpreted in the clinical community, NeurologyLive spoke with Steve Chung, MD, neurologist, Banner-University Medicine Neuroscience Institute, who was not affiliated with the study, who shared his thoughts on the data and discussed what promise CBD might hold in the treatment of TSC.
Treating Seizures in Tuberous Sclerosis Complex
Treating Seizures in Tuberous Sclerosis Complex administrator 2 Views • 2 years ago

Le Bonheur Neurologist and TSC Center of Excellence Co-Director James Wheless, MD, discusses the treatment options available for seizures associated with tuberous sclerosis complex (TSC).
Our Daughter Has Tuberous Sclerosis Complex -- Dan and Laurisa's Story
Our Daughter Has Tuberous Sclerosis Complex -- Dan and Laurisa's Story administrator 2 Views • 2 years ago

Here's the personal story of the Ballew family, who's daughter was diagnose with tuberous sclerosis complex (TSC). TSC a rare multi-system genetic disease that causes non-malignant tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. A combination of symptoms may include seizures, developmental delay, behavioral problems, skin abnormalities, lung and kidney disease. TSC is caused by a mutation of either of two genes, TSC1 and TSC2, which code for the proteins hamartin and tuberin respectively. These proteins act as tumor growth suppressors, agents that regulate cell proliferation and differentiation.

For more information or to donate to TSC research please visit www.tsalliance.org and look for "Unlock the Cure" on the home page.

Resources for Families with Tuberous Sclerosis Complex & Infantile Spasms
Resources for Families with Tuberous Sclerosis Complex & Infantile Spasms administrator 4 Views • 2 years ago

For more information, visit http://www.tsalliance.org/infantilespasms or call 1-800-225-6872.

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