Letters to the Editor

VHL Handbook

I have just received the copies of the VHL Handbook and I want to congratulate you and the membership for putting together a first class production.

I know this will be of great benefit to the many members of the families with this problem as well as many people in the medical community.

I wanted you to know that I think it is an excellent pamphlet and keep up the good work.

-- Robert B. Welch, M.D., Associate Professor of Ophthalmology, Johns Hopkins University School of Medicine, and Chairman Emeritus, Department of Ophthalmology, Greater Baltimore Medical Center, Baltimore, Maryland

Optometrists

To the Editor:

I am disappointed to find no mention of optometrists in your VHL Handbook, except for the delightful illustrations by Vincent Giovannucci, O.D.

Optometrists in all fifty states and the District of Columbia can dilate patients’ pupils and conduct a thorough fundus examination. Optometrists are now being extensively trained in the detection and management of eye diseases.

The importance of a dilated eye exam, whether performed by an optometrist or ophthalmologist, is to detect eye disease. If VHL lesions are found, the patient should be referred to a retinal specialist for the appropriate laser or cryotherapy treatments.

Patients at risk for VHL must be responsible for managing their own eye care. A refraction for a new glass prescription is not a sufficient evaluation for the presence of retinal angiomas. Patients at risk for VHL must share this medical information with their eye care practitioners. Patients should expect, and make sure they receive, a dilated pupil exam that includes a careful inspection of the back of the eye (fundus) for retinal angiomas.

-- John L. Baker, O.D., Associate Professor, Illinois College of Optometry, Chicago.

No Longer Alone

To the Editor:

Thank you for the VHL Handbook. I liked everything!! I wish this had been available when my husband was sick. I had to do my own research on the disease plus the medical staff could tell me very little themselves about VHL. I have gathered quite a bit of information myself from different sources.

It was very frustrating for me because there was literally nothing available. There were no support groups, no literature, no medical staff support. There was nothing, just fear, for sixteen years.

-- Donna M., New Hampshire

To the Alliance:

I am enclosing my donation, and my congratulations. The professionalism, the hope, the will and energy that have brought this about will ultimately defeat VHL.

-- Ron N., Massachusetts

As published in the VHL Family Forum 2:1, March 1994.   For permission to reprint, please contact the VHL Family Alliance at editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.