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Tuberous Sclerosis Complex: What You Need To Know
Prevalence of TSC
TSC stands for Tuberous Sclerosis Complex. This is a rare genetic disorder. It affects about 1 in every 6,000 newborns worldwide.
To make sense of this number, imagine a city with a population of 600,000 people. Based on the prevalence rate of TSC, around 100 babies born in this city would have the disorder.
However, many cases may go undiagnosed or misdiagnosed due to its varied symptoms and severity levels. Therefore, actual numbers might be higher than reported statistics suggest.
In essence: The disease is not common but it's also not extremely rare either. Anyone can get it - regardless of race or ethnicity.
Remember that understanding prevalence helps us grasp how widespread diseases are within populations over time. And such knowledge aids medical research and resource allocation towards finding treatments and cures for these conditions.
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Cancer Risks in TSC
Tuberous Sclerosis Complex (TSC) is a rare genetic disorder. It can lead to growths in various parts of the body. Some may be benign, but some may become cancerous.
Renal Cell Carcinoma or kidney cancer is a concern with TSC. The risk isn't high for every patient. Yet it's higher than average compared to people without TSC.
Growth in other organs like the skin, brain, lungs and heart are also concerns. These are usually non-cancerous but still need monitoring.
Knowledge about your condition is important. Awareness aids prevention and early detection of complications linked to TSC including cancers. Regular check-ups ensure that any changes get noticed promptly by healthcare professionals.
Resources and Information
ClinicalTrials.gov, a database by the U.S. National Library of Medicine, is an excellent starting point. It lists thousands of studies worldwide. You can search for specific conditions or treatments and find related ongoing trials.
Another resource is CenterWatch.com. They offer news, directories of organizations involved in clinical research, and listings for both professionals and patients looking to participate in trials.
Educational institutions also play a vital role here. Many universities have health sciences libraries with access to databases like PubMed and Embase which contain scholarly articles about clinical studies.
In your quest for knowledge about clinical trials don't forget local resources too - your healthcare provider or local hospital may have informational materials available as well.
Remember: Knowledge is power! Equip yourself with accurate information from reputable sources before making any decisions regarding participation in a trial.