Understanding and managing Tuberous Sclerosis Complex-Related Facial Angiofibroma
About Facial Angiofibroma
About 75%-85% of individuals with Tuberous Sclerosis Complex have facial Angiofibroma
Angiofibromas on the face are benign or non-cancerous tumors made up of blood vessels and fibrous tissue which can be caused by a genetic mutation. Exposure to UV rays from the sun can also contribute to the development of facial angiofibromas
Changes in the skin may appear at birth for some individuals. For others, skin changes happen in childhood or adulthood.
Facial Angiofibromas typically appear at early childhood and may grow in both number and size over time if left untreated
These growths may impact quality of life, cause appearance concerns, and may increase the risk of bleeding after minor trauma.
About Tuberous Sclerosis Complex (TSC)
Tuberous Sclerosis Complex (TSC) is a rare genetic disorder with a variety of symptoms that can vary from person-to-person.
Some of the organs that can be affected include the brain, heart, kidneys, lungs, and skin.
While there are multiple skin manifestations, Facial Angiofibroma may be the most visually apparent.
TSC affects nearly 2 million individuals worldwide and is usually diagnosed in children and infants.
This disorder can either be passed on from the parents or arise from spontaneous mutations in someone’s DNA
TSC involves disruption in the mechanistic target of rapamycin (mTOR) pathway, which is involved in regulating cell growth and cell death.
Dysfunction of the mTOR pathway leads to the unchecked growth of benign tumors in multiple organs that characterize TSC.
SC is highly variable across individuals, and can even vary among identical twins
Facial Angiofibroma
Rosacea
Acne
This graphic is for educational purposes only. Skin conditions, including TSC-associated Facial Angiofibroma, may present differently for each person and at different points in time.
- While Facial Angiofibroma may look like acne or rosacea, it is important to recognize that they are distinct conditions. Talk to your doctor about your condition and treatment options.
- While symptoms may be treated effectively, there is no cure for Facial Angiofibroma, and treatment may need to be continued throughout the course of the condition.
- Facial Angiofibroma typically do not resolve on their own, but with a better understanding of facial angiofibroma associated with TSC and the way it affects you, you and your doctor can start managing your condition.
Faces represent an important element of our social environment
The impact of Facial Angiofibroma extends beyond the physical; it weaves into the very fabric of our social interactions, shaping our confidence and self-perception. As our eyes are naturally drawn to our faces, the presence of these benign tumors can evoke feelings of self-consciousness and vulnerability. Many individuals with Facial Angiofibroma find themselves facing not only the visible signs of the condition but also the emotional weight that comes with it, as societal perceptions often amplify feelings of isolation or difference. Yet, understanding and addressing these emotional challenges are essential steps on the journey to reclaiming one’s sense of self and fostering meaningful connections with others. Embracing a comprehensive approach to treatment can empower individuals to navigate both the physical and emotional landscapes of living with Facial Angiofibroma, ultimately enabling them to face the world with renewed confidence and authenticity.
Treatment Options for Facial Angiofibroma
Symptoms vary from person to person. If you’ve been diagnosed with Facial Angiofibroma, talk to your doctor about a treatment plan, including medications.
Gel / Cream / Ointment
Topical therapies may be effective and well-tolerated in the treatment of Facial Angiofibroma.
Laser therapy / Surgery / Cryotherapy
Physical removal may be used to treat Facial Angiofibroma
While surgery is not for everyone, it may be an option for people with moderate/severe Facial Angiofibroma. Removal can include laser therapy, surgical excision, cryotherapy, and curettage for larger tumors.
Close surveillance and intervention are generally recommended for TSC-related skin lesions that rapidly change in size and/or number; cause functional interference, pain, or bleeding; or inhibit social interactions.
Stories in Facial Angiofibroma
Daniel
Patient
Daniel talks about the importance of a multidisciplinary approach to treating his TSC
Emilie
Patient
Emilie discusses how she overcomes the psychosocial effects of Facial Angiofibroma
Julie
Caregiver
Julie talks about the challenges in caring for her son’s facial angiofibroma
Kathy
Caregiver
Kathy gives her perspective as a caregiver for her son with TSC
Kelsey
Patient
Kelsey shares her story about the importance of an accurate diagnosis in individuals with TSC
Find a TSC Center of Excellence or Clinic Near You
TSC Centers of Excellence (COE) and Clinics are healthcare facilities that specialize in the treatment and management of TSC, with many locations across the US. Use the map to enter your address below and find a COE or Clinic near you.
The information herein is for background educational purposes only. A healthcare professional is the best source of information for health-related issues. Talk to your doctor about your health concerns and treatment options.
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