As with other manifestations of TSC, skin lesions caused by the disorder are highly variable from one individual to another, and from one life stage to the next. Some people with TSC may have only hypomelanotic macules or small numbers of facial angiofibromas, while others may see more severe abnormalities in their skin. Although skin lesions seldom lead to serious physiological complications, they can cause physical discomfort and psychological distress. For this reason, adequate monitoring and intervention are important.
Fortunately, recent advances in laser surgery and other treatment options have made living with some of TSC's manifestations in the skin far more bearable.
The most commonly treated TSC-related skin lesions are facial angiofibromas. Treatment becomes important especially for adolescents and young adults when the lesions become more pronounced and more psychologically distressing as a result. In young men, blood-rich angiofibromas can also bleed significantly when they are nicked during shaving.
Although dermatologists have used many techniques to remove angiofibromas, including dermabrasion, shave excision, cryosurgery, and others, the most promising treatment uses various types of lasers to eradicate the fibrous tissue and blood vessels that make up the tumors. The technique usually requires only a local anesthetic, depending on the age of the patient, and most people recover fully within a week to 10 days. Although some research suggests that early intervention may prevent angiofibromas from growing, many experts remain unconvinced that laser treatment can be preventative.
Unfortunately, laser treatments are relatively expensive and, as with other techniques, must be repeated periodically. TSC skin lesions are dynamic, which means that when they are removed or destroyed, they grow back, so treatments must be recurring to be successful.
Dermatologists remove periungual fibromas using both lasers and surgical excision. This becomes necessary when the lesions become physically uncomfortable, especially those that are prone to bleeding, or those that are large and cause difficulties with wearing shoes.
Shagreen patches and forehead plaques can also be treated using lasers. However, because the lesions can grow back, and because laser treatments cause scarring, most dermatologists recommend this option only for very large and particularly disfiguring patches and plaques.
Individuals with TSC should see a dermatologist or cosmetic surgeon who has experience treating people with TSC. If treatment is indicated, these doctors should be qualified surgeons who have experience dealing with medical skin conditions.
Some cosmetic companies also manufacture makeup to cover hypomelanotic macules if they are large or in exposed areas of the skin. For some individuals, the hypomelanotic macules are not problematic, whereas others will choose to cover them with clothing or makeup.
It is important to remember:
- The five most common types of skin abnormalities that affect people with TSC are: hypomelanotic macules, facial angiofibromas, shagreen patches, forehead plaques, and periungual fibromas.
- Accurate identification of these skin abnormalities is often instrumental in the diagnosis of TSC.
- TSC-related skin tumors are benign and generally harmless.
- Most TSC skin abnormalities become more pronounced with age.
- Although the health effects of most TSC skin abnormalities are mild, they can cause physical discomfort and psychological distress.
- Careful monitoring by a dermatologist or physician experienced with TSC can result in more successful treatment of skin lesions should intervention become necessary.
- Make sure your dermatologist is familiar with TSC-related skin abnormalities.
- Make sure your cosmetic surgeon has experience dealing with medical skin conditions.
Cosmetic (Plastic) Surgeon
A cosmetic (or plastic) surgeon is a physician who specializes in surgical procedures intended to change external features of the body that a patient finds unflattering or uncomfortable. A cosmetic surgeon who treats people with TSC may use conventional surgery or laser surgery to remove bothersome skin manifestations caused by the disorder.
A dermatologist is a physician who has been educated and trained in the diagnosis and treatment of skin problems, including both major and minor skin manifestations of TSC.
You can find a list of on-staff physicians on the Herscot Center for Children and Adults with TSC Web site.