Elders’ Role in Testing for Inherited Eye Disease

Many people can relate to personal stories. As a caregiver, I am not exempt from the challenges of health issues. Facing the reality of finding out about inherited eye disease merits discussion. There is nothing under the sun that has not impacted family or community, and eye diseases have changed the lives of many elders. Days past, we paid little attention to genetic testing; in part, the Black community is not trusting, and even today, trust regarding research has improved but is still limited. Genetics experts have identified countless genes that contribute to inherited eye diseases.

Why am I sharing this topic, you may ask? My family has started genetic testing because of an inherited eye disease found in my loved one. The eye disease has progressed to low-vision blindness. If genetic testing had been available when the eye disease was first detected, treatment advancements (maybe)could have progressed sooner. We will never know. We have heard the saying, “When much is known, much is required.”

Why Test?

So, why should you consider genetic testing? Research is important, and the benefits are significant. Genetic testing can enhance the accuracy of eye disease diagnosis, provide valuable insights into your family’s health history, and potentially lead to earlier and more effective treatments. These are compelling reasons to consider genetic testing for your family.

What Eye Diseases Require Investigation

Over time, one’s vision changes. Many of us will wear glasses that may progress to bifocals. This is not necessarily the scenario for genetic testing, but do not rule it out if you feel the information would be of value. A family history of glaucoma, a condition tied to a group of eye diseases that lead to optic nerve damage, Mendelian single-gene diseases, needs investigation, and Macular Degeneration, sometimes age-related all eye diseases that families should know about. If chromosomal abnormalities have been identified, genetic testing is highly recommended. Genetic tests are tests on blood and other tissue to find genetic disorders.

As Your Proactive Caregiver Advocate, I know that the results of genetic tests usually do not change treatment but are helpful for genetic counseling. However, families and family members considering starting a family need to know if elderly loved ones have been diagnosed with an inherited eye disease. Be Safe! Be Well!

Dr. Cynthia J. Hickman is a retired registered nurse and case manager, CEO of Your Proactive Caregiver Advocate and author of From the Lens of Daughter, Nurse, and Caregiver: A Journey of Duty and Honor, and The Black Book of Important Information for Caregivers.

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