Genetic Counselors are Advocates for Patients and Their Families
Kellogg's counselors give patients a short course in genetics
There are only 10 ophthalmic genetic counselors in the United States and two of them reside at Kellogg. According to Kari Branham, M.S., Kellogg's lead genetic counselor, genetic counseling is an integral part of caring for patients who have inherited retinal diseases. "Genetic counselors are trained to explain these complex, scientific issues to people in a way that will help them understand more about their disease," says Ms. Branham.
Most of the patients Ms. Branham sees are referred by Kellogg retina specialist John R. Heckenlively, M.D. They see Ms. Branham as part of their comprehensive first visit. During a typical appointment, Ms. Branham talks with patients about their diagnosis and reviews information about their disease. She also explains how the disease is inherited and informs them of available genetic testing, describing its benefits and limitations. Lastly, she spends time talking about how to understand the genetic test results.
Ms. Branham explains that some patients will decide to have testing even though treatment is not yet available for many inherited eye diseases. They may figure that the results will help them make career or lifestyle decisions and that a genetic diagnosis will provide the information needed when treatments begin to emerge.
If patients proceed with genetic testing, the analysis takes place in Kellogg's state-of-the-art Ophthalmic Molecular Diagnostic Laboratory. The services include Ms. Branham's on-site genetic counseling, both before and after the testing.
"I like to think of myself as an advocate for my patients," says Ms. Branham. " am their resource when it comes to sharing the most up-to-date information on their disease, and I'm there to help them find the support they need."
Kellogg's genetic counselors see about 400 patients per year. They also work with clinicians and genetic counselors throughout the country to help patients get the information they need. In addition, they are involved heavily in research and clinical trials.
Donald Moore, 64, has been diagnosed with Stargardt disease — a disease characterized by progressive loss of central vision. He is one of many patients who find Kellogg's genetic counseling valuable. "I am so surprised that other eye centers don't have counselors to help patients with their diseases," says Mr. Moore. "Having genetic counselors really increases a person's confidence in an eye center."
Currently, Mr. Moore's vision is stable and he visits Kellogg once a year for a routine eye examination. He hopes to see a cure for his disease in his lifetime and says, if that happens, he believes that Kellogg will have played a key role in the discovery. "I've never heard of an eye center more on top of these diseases," says Mr. Moore. "I have a feeling they're going to solve the next big thing."
For more information, see the Retina, Uveitis & Ocular Oncology Clinic at the U-M Kellogg Eye Center.
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