Recently several new information resources have emerged on TSC and the skin. Although many medical professionals view the skin signs of TSC as a minor concern, it is often reported as significant by many patients and their families.
You can read about these signs and symptoms on our information page on the skin.
Here is a summary of the new information:
- Evidence that exposure to the sun causes facial angiofibromas:
In an article published in Human Molecular Genetics, Advance Access December 18, 2013, a team of researchers showed UV radiation in sunlight contributes to the development of facial angiofibromas in TSC. This observation suggests that measures recommended to the general public to minimize UV exposure may be even more important for those with TSC.
These measures include: 1) seeking shade, particularly between 10 a.m. and 2 p.m., 2) wearing clothing that blocks sunlight including a broad-rim hat, 3) applying generous amounts of a broad-spectrum, water resistant sunscreen with SPF 30 or greater to sun-exposed areas, and 4) not using tanning beds.
Magdalena E. Tyburczy, Ji-an Wang, Shaowei Li, Rajesh Thangapazham, Yvonne Chekaluk, Joel Moss, David J. Kwiatkowski, and Thomas N. Darling. Sun exposure causes somatic second-hit mutations and angiofibroma development in tuberous sclerosis complex Hum. Mol. Genet. (2014) 23 (8): 2023-2029 first published online November 23, 2013 doi:10.1093/hmg/ddt597
- Preliminary results from the randomised clinical trial into the use of topical rapamycin for angiofibromas were presented at the World TSC Conference in the USA in July 2014. The recording has been added to our resource directory.
- A follow up study has been published in the Australian Journal of Dermatology on the use of topical rapamycin in a group of patients in Perth. This article has been added to our resource directory.
- We have updated the article on the availability of topical rapamycin from compounding pharmacies around Australia. Thank you to the pharmacists and the families involved in maintaining this list.
If you have any questions on this or other TSC information, please do contact us.