Sickle cell, ageing and quality of life

Some time ago, I was having a conversation with my cousin about the small changes that could improve the quality of life for people living with Sickle Cell Disease. Living with a lifelong illness makes it difficult to experience a good quality of life, so I decided to look into what “quality of life” really means.

Living a good quality of life means feeling physically, emotionally, and mentally well, and being able to engage in activities that bring fulfilment, satisfaction, and happiness.

It involves having good health, stable relationships, financial security, and the ability to pursue personal goals. A good quality of life is also about experiencing a balance between work, leisure, and social connections while feeling a sense of purpose, freedom, and control over one’s life.

For anyone affected by SCD, their quality of life is often lower compared to someone who is not living with a chronic condition. For instance, a healthy person can go outside in cold weather and enjoy a run or jog without much concern. However, someone with SCD can’t engage in such activities without facing negative consequences afterwards.
Living with a physical disability such as SCD, undoubtedly brings significant challenges.

Physically: Everyday tasks can be tough. Manoeuvring through spaces, going up the stairs, hills or bumps, and even opening doors independently can be a struggle. I often find myself wondering, “Will this place be accessible?” Accessibility and physical limitations are constant considerations in navigating the world.

Economically: There are financial burdens associated with being disabled. The cost of repairs if one’s wheelchair breaks down is always a worry. Going to the hospital frequently, for doctor visits or for tests, and outpatients add up.
Emotionally: The constant reminder that one can’t do certain things can be hard to cope with. There’s a stigma that can come with living with SCD, which can make it difficult to find a job or make friends. It wears on one over time. Being unable to quickly dash around the house, or outside or move spontaneously can be frustrating. Every movement and errand requires planning, and physical activity feels slower and more deliberate.

The focus on finding a cure for sickle cell disease often overshadows the quality of life for those who are older and already living with the condition. For adults in their 40s and beyond, managing chronic pain, organ damage, depression and other complications becomes the central issue.

The drive for a cure is essential, but an equally strong push is needed to improve day-to-day care, mental health support, and long-term quality of life. Balancing the focus on a cure with improving daily care could make a huge difference for the ageing population living with SCD.

For many, the medical focus often skews toward paediatric care with less emphasis on improving the lives of older adults already managing the disease. While there is progress, more can be done to address the unique needs of this group.

Adults with SCD often experience multi-organ complications. Regular screenings and preventive measures for kidney, lung, and heart health could help catch problems early and prolong quality of life.

Here are some areas where doctors and researchers could focus more on enhancing the quality of life for people living with SCD in middle age and beyond:

Enhanced pain management: Developing better, more tailored approaches to managing chronic pain and acute crises. Many older patients with SCD have developed pain tolerance or complications that require more sophisticated care.
Chronic pain is a significant issue for older adults with SCD, and long-term opioid use can have side effects. Developing non-opioid pain management strategies, including integrative approaches like physical therapy, acupuncture, and mindfulness, could greatly improve their quality of life. Personalised pain management plans can also reduce hospitalisations.
Mental health resources: Dealing with the lifelong stress of SCD, compounded by ageing, can take a toll. SCD is a physically and emotionally exhausting condition, especially for older adults. Fatigue, depression, and anxiety are common and often under-treated.

Doctors could focus more on psychological care, offering access to mental health professionals who understand the complexities of chronic illness. Specialised mental health support for older adults with SCD is critical, including therapy, counselling, and support groups. Programmes that teach coping strategies, stress management, and resilience could also be a huge benefit.

Multidisciplinary care

People in their 40s and above with SCD often face complications like kidney disease, pulmonary hypertension, stroke, or heart disease. Multidisciplinary care teams, including specialists like nephrologists, cardiologists, pain specialists, and haematologists, could provide comprehensive care that addresses these issues before they become severe. To ensure optimal health outcomes, referrals to other organ specialists must be made promptly. Once a referral is initiated, it is equally important that there is a swift turnaround in scheduling and seeing the specialist. Prompt attention to these referrals can significantly enhance the effectiveness of treatment and contribute to better overall patient care.

Long-term health monitoring

Adults with SCD need consistent and proactive monitoring of their organ health. Regular check-ups that include imaging, blood tests, and organ function tests could prevent severe complications. For example, early detection of heart or lung problems could lead to better interventions.
Physical and occupational therapy

Maintaining mobility and independence is important for people with SCD age. Physical therapy and occupational therapy can help manage joint damage, promote muscle strength, and improve flexibility. This could prevent some of the mobility issues that arise from joint damage and chronic pain.

Better integration of palliative care

Palliative care isn’t just for end-of-life situations; it’s about improving the quality of life at any stage of a chronic illness. Integrating palliative care into routine SCD treatment could help manage symptoms like pain and fatigue while focusing on what matters most to the patient’s daily well-being.

Research on ageing with SCD

There is still a need for more research on what ageing with SCD looks like, especially for people who are surviving into their 50s and 60s. Understanding how the disease progresses in older adults can help guide better treatments and interventions specific to this age group.

Doctors and healthcare providers need to think holistically about what ageing with SCD means, focusing not just on survival but on thriving—helping people in their 40s and above live fuller, healthier, and more independent lives.
I don’t dwell on the frustrations too much. I think about them sometimes, but I try to enjoy every day. However, despite these burdens, this is the only life I have. I do my best to stay positive and make the most of it, though there’s no denying that living with SCD is hard.

Until next time. If you would like to get in touch with me about sickle cell, do so, via my email address; [email protected].  And do check out my blog:     https://www.dailylivingwithsicklecell.com/ My book on Sickle Cell – HOW TO LIVE WITH SICKLE CELL and my other books are available for purchase on www.amazon.com.