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Starting a New Treatment Plan
Navigating a new treatment plan can elicit mixed emotions – on one hand, starting a new plan may seem daunting, while on the other, a change can provide hope and excitement. Having transparent communication with your healthcare team will make a huge difference during this process. Be open, honest, and prepared with questions will ensure
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Spotlight on TSC Alliance
2024 marks the 50th anniversary of the TSC Alliance®! Throughout the year, we’ll celebrate five decades of progress as well as look forward with much promise for the future. Join in the celebration by attending our 50th Anniversary Gala in New York City on Friday, October 25, 2024. Get your tickets now! In 1974 four
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Lungs
Lung involvement is more common in women with TSC than men. The average age of onset is during the childbearing years, although lung involvement can occasionally occur in teenagers with TSC, as well as in postmenopausal women. This suggests that lung involvement in TSC could be estrogen related. However, a very small number of men with
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Surveillance & treatment
The following table provides guidelines to help you and your loved one manage the treatment of TSC. Additional information for your physician is available here. Surveillance & management recommendations for TSC For the Newly Diagnosed or Suspected TSC For Individuals Already Diagnosed with TSC Genetics Obtain three-generation family history to assess for additional family members at
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Adult diagnosis
Receiving a diagnosis of a rare genetic disease as an adult can be confusing and overwhelming. Depending on the findings, it is important to have ongoing conversations with your healthcare team on what to expect. Explore the following sections to learn more. Reviewed by Ashley Pounders, MSN, FNP-C, November 2023.
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Childhood diagnosis
Receiving a diagnosis of a rare genetic disease for your child is overwhelming. Depending on the findings, it is important to have on-going conversations with your healthcare team on what to expect. Explore the following sections to learn more. Reviewed by Ashley Pounders, MSN, FNP-C, November 2023.
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Prenatal diagnosis
Receiving a diagnosis of a rare genetic disease while pregnant can be overwhelming. Depending on the findings, it is important to have ongoing conversations with your healthcare team on what to expect. Explore the following sections to learn more. Reviewed by Ashley Pounders, MSN, FNP-C, November 2023.
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Sabril Supply Issue Recommendations
The TSC Alliance® is aware of the current supply issue with Sabril Oral Solution, 500 mg packets; it does NOT affect Sabril tablets 500mg. Lundbeck estimates this issue will be resolved in January 2024. If you or your loved one is on the oral solution and currently experiencing drug shortage issues, we recommend the following
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0 to 6 months old with TSC needed for research study
Why are we doing this study? Epilepsy is very common in infants diagnosed with tuberous sclerosis complex (TSC) and often very difficult to treat. This study tests if sirolimus, a medication used in older children and adults with TSC, is safe and effective in preventing epilepsy in infants with TSC before seizures have a chance
TSC Alert
MILED Trial Currently Enrolling Women with LAM
Please circulate the following to your patients with lymphangioleiomyomatosis (LAM): The MILED Trial is a new research study designed to answer the question of whether we should be starting sirolimus at low doses earlier in the course of disease before symptoms develop and while lung function is still normal. It is led by Dr. McCormack