AMD and Your Family
What is the impact on family and loved ones when they learn you have AMD?
That day I found out I had AMD was 8 years ago. Upon returning home from the eye doctor, I told my wife of my diagnosis. She was caring and compassionate but really didn’t know what this all meant. In the following weeks I informed my 3 grown children, they exhibited concern and sorrow. But looking back, they really didn’t know if I was going to go blind rapidly or what. They had no inkling of what the future held for me. It was a scary and emotional time.
PTSD from a vision loss diagnosis
We’ve all heard the term PTSD, it’s the abbreviation for post-traumatic stress disorder. I think my entire family had a dose of this upon discovering “the old man” may not be “bulletproof” after all. My wife and children put on a good front but I knew they were worried about me. Most of us go through life optimistically and when we hit speed bumps, it’s a gut check.
D-Day (diagnosis day)
The day I received my diagnosis of AMD is not really etched in my memory. Like most of us, I was shocked, afraid, confused, and even panicked. The first person I told was my wife, she was supportive and concerned. She wasn’t sure if it meant with certainty that I would go completely blind or what. And at the time, I didn’t have sufficient knowledge to answer very many of her questions. I did not go into a planning and strategy mode, that came later, much later.
My spouse's reaction
Looking back, these are some of the thoughts my wife probably had:
- Is he overreacting? Is it really as bad as he portrays?
- The fear of being a caregiver and the burden of being my chauffeur.
- Having to do all the grocery shopping and sole cooking duties.
- Laundry, bill paying, contracting all the yard work and home maintenance out.
- Taking the car in for servicing.
- Lack of personal freedom and time away.
My children's reaction
What did my children think about this?
- Is AMD a genetic trait that they shared with me?
- What should they do about it? What did the future hold for them?
- Am I supposed to help my father when he becomes impaired and dependent on others?
- Should they go to the eye doctor right away and get checked out?
How common is macular degeneration?
- By 2020, an estimated 196 million people worldwide will be affected by AMD
- AMD is the top cause of visual disability in the developed world, and the third cause worldwide
- The yearly healthcare costs of AMD in the U.S. are $255 billion, making up almost half of all costs related to care for vision loss
Macular degeneration risk factors
Factors that may increase your family's risk of macular degeneration include:1
- Age. This disease is most common in people over 50. Some studies indicate 1 in 8 over the age of 60 have some form of AMD.
- Does family history and genetics play a part? Certain genes have been strongly associated with this disease. Genetic predisposition may account for half the cases of age-related macular degeneration in this country.
- Race. Macular degeneration is more common in people of European and Asian ethnicities.
- Smoking is the single most controllable risk factor that contributes to the development of AMD.
- Obesity. Some studies suggest if you have a body mass index (BMI) over 30 it can double your risk of AMD.
- Cardiovascular disease. Some studies with those in late or advanced AMD shows an increased risk of CVD.
Your family history of the disease is your family medical tree. Heart disease, cancer, and high blood pressure also tend to run in families. Some hereditary diseases can be passed down from parent to child through a defective gene.
What I want to tell my family and loved ones, is to simply be mindful and vigilant of risk factors associated with AMD. To get regular bi-annual eye exams and be as healthy and happy as they can be. I wish that for all of you too!
Do you find it easy to advocate for yourself?