An Important Birthday Has Me Thinking About Chronic Illness and Aging

Alliah Czarielle avatar

by Alliah Czarielle |

Share this article:

Share article via email
main graphic for the column

My husband, Jared, and I are both in our late 20s. In a few months, Jared will be turning 30, and I will follow next year.

I used to fear the day I would reach the big three-oh, but now I am excited. I view the 30s as a decade of wisdom, self-assurance, and greater financial stability. We may not have reached all of the milestones typically associated with turning 30 yet, but we’re not in a big rush, either.

Now that we have a 3-year-old daughter, we’re inspired to chase after our personal and financial goals, but also reminded to take breaks and rest when needed.

At our age, we feel confident of many good years ahead. However, we also can’t help but think about what our lives might be like when we get older. Because Jared has severe hemophilia B and a seizure disorder, the subject of aging comes with a number of questions — and few answers.

We all know that our bodies change as we age. We become more prone to age-related health conditions. By midlife, many begin to acquire chronic illnesses and some become disabled. In Jared’s case, he was born with hemophilia and eventually acquired a seizure disorder due to a brain bleed. Since much of the available literature on aging focuses on people without preexisting conditions, we feel uncertain about what to expect as we get older.

Recommended Reading
normal factor IX levels | Hemophilia News Today | illustration of positive trial data

Factor IX Levels Normal After Gene Therapy for First 3 Patients in Trial

One question I wonder about is how often we’ll need to go to the hospital as we get older. Healthcare is expensive here in the Philippines, especially when considering an average family’s income. If Jared or I were to develop an age-related illness in addition to the chronic illnesses we are already managing, we may need to see doctors quite often. This would have a big impact on our family budget, especially if we are still financially supporting our daughter.

Another concern we have is how Jared’s physical condition might change as he ages. Normal wear and tear eventually causes people’s joints to deteriorate. But with hemophilia, Jared’s joints are under an increased level of strain. He already has synovitis, or inflammation of the synovial membrane, in his right ankle, which first appeared when he was in college. As a result, the flexibility of his right foot is limited. Thankfully, it hasn’t worsened since then.

I’m glad that in the eight years I’ve known Jared, he hasn’t had any additional complications from hemophilia. Yet he still bleeds about once a month because prophylactic treatment is still not available in our country. We don’t expect that any new treatments will emerge here anytime soon. If Jared continues with an on-demand factor treatment plan for another decade, would his physical condition remain as stable as it is now?

The prospect of getting older comes with all sorts of uncertainties, but being aware of these unknowns makes us more determined to enjoy the life we have today, as we prepare for every possibility the best we can. After all, we can only do so much — save money, purchase health insurance, and take care of our bodies. At the end of the day, no one is entirely prepared for the health challenges that might lie ahead.

In the meantime, we choose to live a balanced life, with just the right amount of caution to prevent severe bleeds, coupled with a healthy amount of adventurousness so that we can make both money and memories. And who knows, future advancements in medicine just might be helpful in easing the burden of hemophilia and allowing Jared and others like him to age gracefully.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.


Leave a comment

Fill in the required fields to post. Your email address will not be published.