Resources

Editor's Note: While VHL always involves abnormal or out-of-control cell growth, not all VHL tumors are potentially malignant; some are. Technically, VHL is a familial cancer syndrome. Most of us don't normally like to describe VHL as a cancer. In the service realm, though, using the cancer description gives you access to a wide range of services that could benefit you and your family.

Cosmetics and Wig Care

"The 'Lipstick Theory' is the observation made by medical professionals that when a woman battling cancer starts to put on her lipstick, she is on the road to recovery," says William Cahan, M.D., Senior Attending Surgeon, Memorial Sloan-Kettering Cancer Center, New York.

The premise is: if a patient can be helped to look good, he or she will feel better and the quality of life can be improved.

Look Good...Feel Better, which was launched in March 1989, is a free national public service program dedicated to teaching cancer patients -- through hands-on experience -- techniques to help restore their appearance and self-image during treatment. Trained and certified volunteer cosmetologists conduct Look Good...Feel Better group sessions at comprehensive treatment centers, local hospitals, and salons. They help women regain control of their appearance by demonstrating how to camouflage the appearance-related side effects of treatment, including loss of hair, eyebrows and lashes, and changes in skin tone. In addition, patients are shown how to use wigs, turbans, and scarves to hide hair loss. It is important to note that Look Good...Feel Better is non medical and product neutral.

"Look Good...Feel Better reminds us in the medical community that healing the psyche can be equally as important as healing the body," says Marc E. Lippman, M.D., Director of Psychooncology Research at Georgetown University Medical Center and the Lombardi Cancer Research Center in Washington, D.C. "At Look Good...Feel Better sessions there is an almost tangible emotional shift. The participants, many of whom come into the room alone and frightened, begin to sense the care and concern of the volunteer cosmetologists and the community of survivorship they share with their fellow patients. Their spirits are visibly lifted."

Look Good...Feel Better is sponsored by the Cosmetic, Toiletry and Fragrance Association, the public service arm of the U.S. cosmetic industry's trade association in partnership with the American Cancer Society (ACS), the world's largest voluntary health agency, and over 45,000 hairstylists, estheticians, wig experts, makeup artists, and nail technicians who are members of the National Cosmetology Association (NCA).

In some areas you can apply for a free wig if you can't afford one and your insurance does not cover it. When you call, say that you have VHL, which is a familial cancer, and they will be happy to include you in the program.

The program is operable now in U.S., Canada, Australia, and New Zealand. It is expected to be operating in the U.K. in 1994.

In the U.S., call your local office of the American Cancer Society or 1-800-227-2345.

Before and After photographs courtesy of Look Good . . . Feel Better, The Cosmetic, Toiletry, and Fragrance Association, Washington, DC

Corporate Angels

suggested by Lee-Anne B., Connecticut

If you need air transportation to treatment, you can apply to the Corporate Angel Network, Westchester County Airport, Building One, White Plains, NY 10604. Judith Haims, Administrator, telephone 1-914-328-1313. This is a charitable organization of the U.S. corporations that own aircraft. They volunteer empty seats on business to cancer patients in need of transportation to or from recognized treatment. This service is not dependent upon financial need.

Patients must be able to board the aircraft unassisted, not require special equipment or services en route, and have proper medical authorization for the flight. CAN will transport one friend or family member with the patient. You are responsible for your own ground transportation. You do not have to be in financial need.

Being flexible on airports and dates increases your chance of getting a flight. Lee-Anne says it's worth it -- "they really are angels!"

In Canada, Mission Air Transportation Network arranges free flights for patients if they must travel outside of their communities to obtain recognized medical care and they cannot afford the airfare. If required, an escort may accompany the patient. Mission Air utilizes aircraft seats donated by corporate, commercial and government sponsors.

Patients must be Canadian residents, may be any age and require treatment or diagnosis for any type of illness. Medical clearance is required and although wheelchairs can often be accommodated, patients must be able to sit in a regular aircraft seat and must not require medical care during the flight. A minimum of three full business days are required to arrange a flight. For more information contact Mission Air Transportation Network, 10 Alcorn Avenue, Suite 200, Toronto, Ontario M4V 3B1. Tel: (416) 924-9333, Fax: (416) 924-5685.

When we inquired about similar services in Europe, we were told that the distances are less vast and air service is not as essential. Where needed, courtesy train or taxi transportation can usually be arranged through physicians.

[Note 12/97: See also Yahoo: Medical Transportation]