North Carolina Macular Dystrophy: Living with Low Vision. I’m Mohamed, and I’m a student intern who just started working with Accessible Pharmacy Services this summer. I am legally blind. I was diagnosed with a genetic condition known as North Carolina Macular Dystrophy as a child. I’ve had it all throughout my life and as you can probably tell by its obscure and uncommon name, it’s a rare condition. By manifesting as dead scar tissue across the center of my retina, it affects my macula, also known as the part of the retina whose role it is to see fine details, color, and central vision. Fortunately for me, my color vision is unaffected, and my condition is assumed to not get any worse across my life.
Right now, you might be asking “So what does that mean for you?” Well, many of you, who are either listening or reading this, probably have similar experiences/challenges to myself. Not being able to read a sign or label, not being able to tell apart the faces of many of those you know, and not being able to do many of the things that others are able to do on a daily basis, like drive or read. However, while all of these challenges have affected me my whole life, the inability to see does not come in one form. It’s also a part of who we are that we can’t deny or reject. Blindness and vision loss should not be something we admit defeat to, but instead, it’s something that we can all overcome. That is something that I and it’s something I believe anyone can do.
According to the National Institute of Health, North Carolina macular dystrophy (NCMD) is an inherited eye disorder that affects the development of the macula, the small, but important part of the eye located in the center of the retina. The macula allows a person to see fine details and do tasks that require central vision, such as reading and driving. It is also important for seeing colors. The severity of changes in the development of the macula varies, causing some people to have little or no vision loss, while others may have severe vision loss. NCMD is considered non-progressive, which means most researchers believe the vision loss does not change after birth. Others believe it may progress slowly through age twelve. However, vision loss may increase if complications develop, such as new, abnormal blood vessels growing under the retina (choroidal neovascularization).
NCMD is caused by changes (mutations) in a region of chromosome 6 (MCDR1 locus), as well as in a region of chromosome 5 (MCDR3 locus).Although there is no cure for NCMD, treatment may include low vision aids such as glasses with high powered lenses, large print reading material, and computer software that can turn text into speech.
To read the entire information from the NIH and to learn more, go to: https://rarediseases.info.nih.gov/diseases/9179/north-carolina-macular-dystrophy