Genetic Risk -

How you can empower yourself by understanding your risks

The Powerful Patient #5

Joyce Graff, host, on webtalkradio.net

Keith Richards, "Just Sayin'"

An increasing number of genetic risk factors are appearing in the press. As we learn more about the human genome, we are discovering the genes responsible for a number of diseases. Some are damaged during our lifetimes; others may be inherited. When a tiny flaw in one of these genes is inherited, this person has an increased risk of developing a problem. Exactly how much the risk is elevated is a question for a genetics professional.

In this show we talk with Keith Richards, aka Just Sayin', a poet and Hip Hop artist from New York, about his brain tumor experience Clips from two of his songs are included in the show. We also speak with his mother, to hear her perspective on Keith's surgery and on the family health history.

Kidney cancer is rising in the African American community. An estimated 5% of that is due to genetic risk factors. If you know you have one of the genetic risk factors for kidney cancer, your chances of surviving kidney cancer are in fact better than the general population. That risk factor can be used as an early warning system, giving you a much greater chance of early detection and treatment.

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Program guide for this show

Living with Genetic Risk Factors

Keith Richards, "Just Sayin'"

Nearly every day we are hearing about newly discovered genetic risk factors for cancer and other diseases.

If a condition seems to run in your family, you may wish to put together a Family Health Tree, This collection of information can help you see more clearly whether or how the condition may run in the family. It can also be useful in preparing for a visit with a genetic counselor or geneticist, who can help you interpret this information.

In the family you will hear from in this show, there is a known genetic risk factor in Keith’s mother’s family. Keith, his mother, his aunt and uncle, and his grandfather all carry a tiny misspelling in one gene – one word in an entire book of instructions for making one protein in the body. This tiny flaw is enough to increase their risk of developing several kinds of tumors – eye, brain, spinal cord, kidney, and pancreas.

Once a risk factor like this has been identified in a family, it is important to communicate this information to other relatives, alerting them to this risk so that they too can watch out for early symptoms, identify problems early, and deal with them appropriately. This information sometimes “gets lost” between generations, as two occurrences of the problem might be 20 years apart.

With early detection and careful management, most such conditions can be managed quite well. But as you will hear from Keith and Kathy, you have to be an active participant in your health care.

Our Guests

Keith Julian Richards (aka Just Sayin’) is a poet and Hip Hop artist from New York, winner of Martin Van Buren High School’s Star Search Talent Show, and many other competitions, he now performs regularly in New York and is a regular guest on radio shows as an expert on popular culture. His “day job” is as a social worker with teenagers and families in New York City.

See him on MySpace - justsayin718
His CD’s are available at www.cdbaby.com/cd/justsayin
Read his story at http://www.vhl.org/power
Keith is available by arrangement for performances, speaking engagements or radio/TV appearances.
Write to him at keith.richards@vhl.org

Kathy Richards, Keith’s mother, is recently retired from a business career. She and her husband have two grown children in their 20’s. They have moved to a new home in North Carolina. Kathy’s sister, Altheada LaVerne Johnson, is an active volunteer for the VHL Family Alliance, and heads the Information Hotline committee.

Altheada’s story can be found at http://www.vhl.org/newsletter/vhl2005/05ddalth.htm
Write to Altheada at altheada@vhl.org

About von Hippel-Lindau

Von Hippel-Lindau (VHL) is a genetic cancer risk factor, raising the probability that you will get one or more tumors in your lifetime in one or more of the following areas of the body:

Retina
Brain
Inner Ear
Spinal cord
Kidney
Pancreas
Adrenal glands

Depending which tumors grow, the symptoms will vary widely. Diagnosing a new case of VHL is quite difficult. If a family knows that there is some level of risk, it is important to communicate that information to other family members, and use that information to protect yourself and others by finding issues early, and treating them appropriately.

With early detection and careful management, people with VHL are living full and happy lives. Delayed diagnosis or inappropriate treatment can result in significant disability or death.

For information about VHL, see http://www.vhl.org, and especially the Handbook at http://www.vhl.org/handbook

For the publication on compiling a Family Health Tree, see http://www.vhl.org/power

The quote from Dr. Phil about dealing with difficult emotions can be found at http://www.oprah.com/tows/pastshows/tows_past_20011002_c.jhtml , along with his Three Steps to begin healing, and Seven Suggestions to help you cope with difficult emotions.