In honor of Macular Degeneration Awareness Month, AMD blog was lucky enough to conduct an e-interview with Leslie Degner. Mrs. Degner is a registered nurse with a Bachelor of Science degree in Nursing and has 20 years of RN experience. One of her life goals is to educate and help raise awareness surrounding macular degeneration, its causes, symptoms and treatment through her website:
Continue reading to learn more about Mrs. Degner, her website and her goals for increasing awareness of this devastating condition:
What is the primary goal of your website?
Many people receive a diagnoses of macular degeneration and often have no idea what that means. Some leave the doctor’s office with a gut wrenching fear that they will suddenly go completely blind while others have no idea of what vision changes to expect. The www.WebRN-MacularDegeneration.com website offers not only information about this retinal disease but also resources for finding low vision specialists, clinical trials, and vision aids. Here is what one reader expressed: “Leslie, I knew nothing about the subject when I was shocked to be told that my eyes showed beginning macular degeneration. I wrote the term into a search box and your site came up in response. Since then, I have learned a great deal from the letters you publish, the research and other information you post and your answers to the people who write to you. ”
When did you first become familiar with macular degeneration?
When my father-in-law was diagnosed with it 20 years ago. After finding out several of his siblings also had AMD, I discovered through further research that AMD has a strong genetic component. This meant that my husband as well as our adult children are at higher risk for developing this macular disease. This led to more research to find out what we can do to reduce that risk or delay the development of AMD.
What kind of visual aids would you recommend to someone learning to cope with low vision?
My first recommendation is to visit a low vision specialist who can assess a person’s vision and make recommendations based on their individual situation. That said there are many people with AMD who are never going to do this – including my father-in-law. The key to recommending visual aids is to first have the patient identify what tasks or hobbies they are frustrated with because of their vision. For example, my father-in-law loves to read the daily newspaper but it became too much of a struggle to see the small print. He is 87 and although he has an electronic book reader – he had trouble navigating how to find the daily downloaded versions. So we then tried a dome magnifier and that worked for a while, but then as his vision deteriorated it was no longer effective. So then we got him a lighted dome magnifier with higher magnification and he is back reading the paper everyday. There is a vision aid for almost any task whether it is for writing checks, cooking in the kitchen or enjoying your favorite magazine.
Does your role as a nurse effect how you feel about AMD?
Oh yes. I’ve always seen one of my roles as a registered nurse to be an educator and a patient advocate. One day an elderly man called our healthcare facility asking to get a 4th opinion from one of our retina specialists to treat his macular degeneration. During the conversation it became apparent he was seeking a cure for his AMD. I asked him if he had ever heard of a low vision eye specialist who could help him maximize the vision he did have. He responded that in all of his visits to retina specialists he couldn’t remember anyone telling him about this resource. He was thrilled to hear that there was a clinic that could offer him an assortment of visual aids and he was referred to one of our low vision optometrists.
How do you support and/or help those with the condition who reach out to you?
There are several ways that the website supports those with AMD or wanting to prevent AMD. It helps people understand what kind of vision changes result from the degeneration of the macula. Many people believe that they will go black-out blind which means there is lots of misinformation and/or misunderstanding. Others are not aware of the many vision aids available to maximize their usable vision. Like my father-in-law, who believed he would never be able to read the newspaper again, but now can because of a new visual aid he is using. And maybe, just like us, there are those who have a strong family history of AMD and want to be proactive in preventing or delaying the development of AMD. The website gives nutritional advice that supports not only a healthy macula but a healthy body as well. Another favorite aspect of the website is the stories other readers share – about how they are dealing with their vision losses, how they got a second opinion, what low vision technology has changed their life, etc. Many others can identify with their stories and feel some kind of comfort knowing they are not alone.
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