Track Skin Changes
Some TSC skin problems may appear at birth. Others develop later in childhood or even in adulthood. But most people with TSC eventually have at least one skin problem because of TSC.
Some people have skin changes with TSC that can barely be seen. Others may have growths on the skin that cause pain or bleed easily. These tumors on the skin can be hidden in certain areas but could become embarrassing if they are more easily seen, such as when they are on the face.
Keeping track of any changes in your skin is important.
Most TSC Patients Experience Skin Problems
Signs & Symptoms
- Light patches of skin that may appear in different shapes on the back of the body, arms, legs, head, or neck
- Seen in about 9 of every 10 people with TSC
- Noncancerous tumors made up mostly of fibrous tissue
- Occur in 3 of every 4 people with TSC
- A large area of elevated pink skin found on the forehead
- Occurs in 4 of every 10 people with TSC
- Small tumors that occur around the fingernails and toes (and are not life-threatening)
- Occur in 20% of people with TSC overall, but in up to 8 of every 10 older adults
- Areas of thick, leathery, pebbly skin usually located on the lower back
- Occur in approximately half of all TSC patients
Manage Your Symptoms
Dermatologists specialize in the health of the skin and the treatment of skin diseases, including TSC.
A physical exam can help detect skin problems
Dermatologists may look for:
- Patches that are lighter in skin tone than the rest of your body’s skin (hypomelanotic macules)
- Small bumps on your face (angiofibromas or fibrous cephalic plaque)
- An area of thick, pebbly skin on your back (shagreen patch)
- Fibrous growths around your fingernails and/or toes (ungual fibromas)
- Small spots (“confetti” skin lesions)
Keep track of your skin concerns and talk with your doctor
- Get your skin examined each year and speak with your doctor about any skin concerns you have
- Note skin changes to see if there is a pattern
- Tell your doctor right away if you find patches, bumps, or discolored marks, as this may be a sign that your TSC symptoms are changing