The VHL Handbook (3rd International Edition, 2005) urges us to manage this disease with our “medical team”. Having lived with VHL for nearly 30 years (I was born long before the days of genetic testing), I thought that I maybe had missed something. Although I’d received some training in team functions and management through my previous job, I had never thought about applying the principles I learned to the management of my disease. I had assumed that I was on my own in this realm. That is, until I contacted the VHLFA about this. In response to my inquiry, Joyce G. set up an email account, asking people to reply to my team questions: june@vhl.org

We would love to hear from you -- your questions and your suggestions. How have you approached gathering the specialists you rely on? Would you describe them as a “team”? What role do you play in getting them to communicate with one another?

Since many of our “team” members are highly-trained, very busy specialists, can we rely on them to take the time to communicate with all our other doctors? Does it make sense to have one person as the “hub” for these communications? In your case, is that you? or your general practitioner? or someone else?

What is the proper role of the patient, who probably is not medically trained but often is required to deal with complex, medical issues? Are there models out there where people living with other chronic conditions have developed successful, long-term management plans?

What about non-conventional care? For instance, I regularly see an acupuncturist to help me achieve optimal health while living with VHL. What complementary therapies do you use to maximize your health?

Finally, what have you learned about interacting successfully with your insurance company? What financial pressures have you met, and how have you dealt with them?

These are a few of the questions I have about living with this chronic illness. I will look forward to hearing from you, hearing your own questions, and learning from your own experiences and ideas. Please write to me at June@vhl.org, or respond to the Discussion we have started in the VHL Online discussion group, under the Topic “Health Management Issues”.

Thank you! Let’s pool our knowledge and learn from one another.

June@vhl.org or http://vhl.clinicahealth.com