Fifteen people gathered in Memphis November 20 for the 2004 Mid-South meeting. People came from Arkansas and Mississippi to learn about new sources of treatment for people with VHL. Speakers were Selvi Palaniappan, a genetic counselor from Vanderbilt in Nashville; Dr. Chris Friedrich, a geneticist from University of Mississippi in Jackson; and Dr. Jose Claudio Rocha from Brazil who is in Memphis on a post-doctoral research appointment at St. Jude’s Children’s Cancer Research Center in Memphis. Ms. Palaniappan and Dr. Friedrich spoke about their practices, and about services for VHL available in Jackson and Nashville.

Dr. Rocha told us the story of his research project in Brazil. He diagnosed a patient with VHL and checked the records at his very large, very fine hospital in Saõ Paolo. There were no other VHL patients listed in their database! Finding this impossible to believe, he worked to spread word of his research project among physicians, and on radio and television. Over the next five years he identified 80 people with VHL in 27 families in Brazil. He has begun a family support organization there, in cooperation with VHLFA, and is offering free DNA testing for people with VHL in Central and South America.

Dr. Rocha told us about the state of research toward drug therapies for VHL, and the work he has been doing at St. Jude’s. While there is good progress, we should not pin all our hopes on drug therapies. The most successful approach today is prevention — early diagnosis, and appropriate treatment. Remember that for breast and prostate cancer the greatest advances in survival have come about because of early detection. If tumors are found earlier, they are much more successfully treated. In the near term, the guidance provided by the VHL Handbook and the partnership of your medical care team are the best way to maintain your health.

The Mid-South is a heavily rural area, with fewer services than many more populated regions of the United States. Dr. Rocha mentioned that in his home city of Saõ Paolo there are 18 million people. There are only 12 million people in all three states of Tennessee, Mississippi, and Arkansas — only two-thirds the population of the city of Saõ Paolo!

There are certainly some talented physicians in the Mid-South area, but it has been difficult to find people who are familiar with VHL. People with VHL have had to shop one by one for specialists in a particular field, with little help and mixed success.

Three major improvements have come about in the last few years.

First, some people with expertise in VHL have moved into the region, notably:

Dr. Lewis Blevins (endocrinology) and Selvi Palaniappan (genetic counselor) moved from Atlanta to Nashville. They have set up a VHL Clinical Care Center at Vanderbilt in cooperation with the VHLFA. +1 (615) 322-8960
Dr. Mary Curtis (genetics) moved from Iowa to the University of Arkansas in Little Rock. +1 (501) 320-2966
Dr. Chris Friedrich (genetics) moved from University of Pennsylvania to University of Mississippi, Jackson. +1 (601) 984-1900
Dr. Bruce Korf (genetics) moved from Boston to University of Alabama, Birmingham. +1 (205) 934-9411

Second, these genetics professionals have been building teams around themselves to assist people with a number of genetic diseases, including VHL. They are willing to assist patients with VHL to find an expert who can assist with a particular problem.

Third, there are a number of new departments of Cancer Risk Analysis. For example, at Baptist Hospital in Memphis there is a new division, Baptist Centers for Cancer Care. The genetic counselors there, Eric Fowler and Ellen Neese, do not have expertise in VHL. However, they are very willing to assist families with DNA diagnosis and with obtaining appropriate care.

We often tease that if you can’t find an expert, you can help to grow one. Doctors cannot be expected to be experts in every rare disease there is. But a doctor with good skills in his or her field, and a willingness to learn, can be an excellent team member. Consider yourself the “owner” of your healthcare team, as if you were the owner of a sports team. You may not know how to do the job yourself, but you know the qualities you need in your players, the talents you need to hire, and the attitudes that will make the team work well together.

You also need a good quarterback — a good leader within the team who makes sure the ball is passed to the person who can lead the team to victory. Your general practitioner may be the person to play this position on your team, or a genetics professional in your area may be able to assist.
And always, keep your own good common sense turned on. No one knows all the answers in VHL. No matter what the level of expertise on your team, your own opinion also counts. Using the Handbook and second or third opinions when necessary, you can create good care for yourself.

We had a great time visiting together, and sharing ideas with some attendees who were new to VHL. We decided to set a date for next year’s meeting and work to make it even better! Mark your calendar and be sure to join us next year in Little Rock, Saturday, November 19, 2005.

As printed in the VHL Family Forum 12:4, December 2004. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.
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