Home

bg-arrows-v1

Understanding and managing
tuberous sclerosis complex-related Facial Angiofibroma

Understanding and managing
tuberous sclerosis complex-related Facial Angiofibroma

About
Facial Angiofibroma

About
Facial
Angiofibroma

This graphic is for educational purposes only. TSC-associated Facial Angiofibroma symptoms may present differently for each person and at different points in their disease progression.

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

Facial angiofibroma may look similar to other skin conditions, such as rosacea or acne

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.

Not an actual patient. Individual conditions and results may vary.

Faces represent an important element of our social environment

As we look at someone, we typically examine the face starting with the area around the eyes and nose.

When we see someone with a facial defect, our eyes naturally focus on the imperfection first.

This may add to the daily emotional impact facial angiofibroma can have.

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.

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.

Gel

Cream

Topical therapies may be effective and well-tolerated in the treatment of facial angiofibroma.

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

Watch as these patients with TSC-associated facial angiofibroma and their caregivers discuss their challenges, successes, and insights.

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.

Find a COE or Clinic near you by talking with your healthcare provider and entering your location below

1. University of Alabama Birmingham Tuberous Sclerosis Clinic

720 20th Street South, Birmingham, AL 35233

2. Arizona Pediatric Neurology & Neurogenetics Associates

3330 N 2nd St, Phoenix, AZ 85012

3. Children’s Rehabilitative Services Tuberous Sclerosis Clinic

3141 N. 3rd Avenue, Phoenix, AZ 85012

4. TSC Clinic at Arkansas Children’s

1 Children's Way, Little Rock, AR 72202

5. Tuberous Sclerosis Clinic at Loma Linda University Health Care

2195 Club Center Dr., Suite G, San Bernardino, CA 92408

6. Children’s Hospital Los Angeles Tuberous Sclerosis Clinic

4650 W Sunset Blvd, Los Angeles, CA 90027

7. UCLA TSC Clinic

300 UCLA Medical Plaza , Suite B200, Los Angeles, CA 90095

8. Benioff Children’s Hospital Oakland Tuberous Sclerosis Clinic

744 52nd St., Oakland, CA 94609

9. Children’s Hospital of Orange County TSC Clinic

1201 W. La Veta Ave., Orange, CA 92868

10. TSC Clinic at Rady Children’s Hospital San Diego

3020 Children's Way, San Diego, CA 92123

11. TSC Clinic at Lucille Packard Children’s Hospital

730 Welch Road, Palo Alto, CA 94304

12. TSC Clinic at Children’s Hospital Colorado & Univ of Colorado

13123 E 16th Ave, Aurora, CO 80045

13. TSC Clinic at Connecticut Children’s Medical Center

282 Washington St, Hartford, CT 06106

14. Tuberous Sclerosis Clinic at Children’s National Medical Center

111 Michigan Ave NW, Washington, DC 20010

15. TSC Clinic at Nicklaus Children’s Hospital Miami

3100 SW 62nd Ave, Miami, FL 33155

16. Advent Health Medical Group Epilepsy at Orlando

615 E Princeton St, Suite 540, Orlando, FL 32803

17. Neurocutaneous Disorders Clinic at Johns Hopkins Children’s

501 6th Ave S, St. Petersburg, FL 33701

18. H. Lee Moffitt Cancer Center - Tampa

3011 Holly Dr, Tampa, FL 33612

19. Children’s Healthcare of Atlanta

1400 Tullie Rd NE, Atlanta, GA 30329

20. University of Chicago Medical Center

5841 S Maryland Ave, Chicago, IL 60637

21. Tuberous Sclerosis Clinic Ann & Robert H. Lurie Children’s Hosp

225 E Chicago Ave, Chicago, IL 60611

22. TSC Clinic at University of Illinois at Chicago

120 N. Oak St., Hinsdale, IL 60521

23. University of Louisville, Norton Children’s Hospital

231 E Chestnut St, Louisville, KY 40202

24. Tuberous Sclerosis Clinic at Kennedy Krieger Institute Baltimore

707 N Broadway, Baltimore, MD 21205

25. University of Maryland

2200 Kernan Dr., Ambulatory Practice B, Room G374, Baltimore, MD 21207

26. The Carol and James Herscot Center for TSC - Boston

175 Cambridge Street, Suite 340, Boston, MA 02114

27. Multi-Disciplinary Tuberous Sclerosis Program – Boston

300 Longwood Avenue, Boston, MA 02115

28. TSC Clinic at Children’s Hospital of Michigan – Detroit

3901 Beaubien Blvd, Detroit, MI 48201

29. TSC Clinic at Helen DeVos Children’s Hospital – Grand Rapids

35 Michigan St NE, Suite 5201, Grand Rapids, MI 49503

30. Beaumont Health System Comprehensive TSC Clinic

18101 Oakwood Blvd., Dearborn, MI 48124

31. TSC Clinic Without Walls – St Paul, MN

2720 Fairview Avenue North., Suite 100, Roseville, MN 55113

32. Tuberous Sclerosis Clinic at Children’s Mercy Hospital

5808 W. 110th Street, Overland Park, KS 66211

33. Children’s Hospital, Saint Louis University School of Medicine

1465 South Grand Blvd., St. Louis, MO 63104

34. TSC Clinic at Northeast Regional Epilepsy Group

20 Prospect Ave, #800, Hackensack, NJ 07601

35. TSC Clinic at Institute of Neurology at St. Barnabas

200 S Orange Ave, #165, Livingston, NJ 07039

36. Montefiore Medical Center

3415 Bainbridge Ave, 4th Floor Bronx, NY 10467

37. TSC Center at the Columbia University Irving Medical Center

630 West 168th Street, New York, NY 10032

38. The TS Center at New York University Langone Medical Center

223 East 34th Street, New York, NY 10016

39. Atrium Healthcare TSC Clinic at Levine Children’s Hospital

1000 Blythe Blvd, Charlotte, NC 28203

40. Duke Medical Center – Durham, NC

2301 Erwin Rd, Durham, NC 27710

41. Wake Forest Baptist Medical Center Tuberous Sclerosis Clinic

Medical Center Blvd, 9th Fl,Pediatrics, Winston-Salem, NC 27157

42. TSC Clinic at Akron Children’s Hospital - Akron

214 W Bowery St, Akron, OH 44308

43. The Tuberous Sclerosis Clinic - Cincinnati

3333 Burnet Ave, Cincinnati, OH 45229

44. TSC Clinic at The Cleveland Clinic - Cleveland

9500 Euclid Ave, Cleveland, OH 44106

45. TSC Clinic at Children’s Hospital, Univ Hospital Cleveland

11100 Euclid Ave, Cleveland, OH 44106

46. TSC Clinic at Nationwide Children’s Hospital – Columbus, OH

700 Children's Dr, Columbus, OH 43205

47. TSC Clinic at Dayton Children’s Hospital – Dayton, OH

1 Children's Plaza, Dayton, OH 45404

48. University of PA (HUP)

3400 Spruce Street, Philadelphia, PA 19104

49. Children’s Hospital of PA (CHOP)

3401 Civic Center Blvd., Philadelphia, PA 19104

50. Children’s Hospital of Pittsburgh TS Clinic

1 Children's Hospital Drive, 4401 Penn Ave, Pittsburgh, PA 15224

51. TSC Clinic at Prisma Health – Columbia SC

8 Richland Medical Park Dr, #420, Columbia, SC 29203

52. TSC Center of Excellence at Le Bonheur Children’s Hospital

800 South Church Street, Suite 104, Jonesboro, AR 72401

53. TSC Clinic at Monroe Carell, Jr. Children’s Hospital at Vanderbilt

2200 Children's Way, 9th Floor, Nashville, TN 37232

54. Children’s Care clinic at Dell Children’s Medical Center - Austin

4900 Mueller Blvd, Austin, TX 78723

55. Texas Scottish Rite Hospital for Children - Dallas

2222 Welborn St, Dallas, TX 75219

56. Cook Children’s Clinic for Tuberous Sclerosis Complex

1500 Cooper Street, Fort Worth, TX 76104

57. Univ of Texas-Memorial Hermann TSC Center of Excellence

6410 Fannin St, Houston, TX 77030

58. Tuberous Sclerosis Clinic at Texas Children’s Hospital – Houston

3023 Kirby Dr, Houston, TX 77098

59. University of Utah TS Clinic- Salt Lake City, UT

81 Mario Capecchi Drive, Salt Lake City, UT 84113

60. The University of Virginia (UVA) Tuberous Sclerosis Clinic

1215 Lee Street, Charlottesville, VA 22903

61. Virginia Commonwealth University (VCU) Health System

3600 W. Broad Street, Suite 115, Richmond, VA 23230

62. TSC Clinic at Seattle Children’s Hospital

4800 Sand Point Way NE, Seattle, WA 98105

63. Swedish Neuroscience Institute – Seattle, WA

550 17th Ave, Suite 540, Seattle, WA 98122

64. Neurofibromatosis & RASopathy Program Children’s Hospital

8915 W. Connell Ct., Milwaukee, WI 53226