As his health worsened and the reality of what was soon to take place became more apparent, it was heart wrenching to see the sadness that slowly started to show in my brother's eyes.
He may have had an idea of what was going to happen as he looked hopefully at my mom, asking what the doctors had said about when he could have his bone marrow transplant surgery but all she could muster in response was for him to build his strength back up so the doctors would feel more comfortable about going through with it. As you already know, he lost his battle with SCD but the outlook of patients still living with the disease has improved (in the developed countries at least). There is now early disease detection, more skilled treatment, better supportive care and greater awareness that allow for longevity of SC patients today. Furthermore, with the introduction of hydroxyurea treatment, morbidity and mortality has significantly been reduced and decreased medical costs also add to patient benefits. On the other hand, many people who have sickle cell live in underdeveloped countries where death from this disease in early childhood is still the norm because of a lack in current advances, access to adequate treatment and care through counselling, support and medical expertise. A lot more still needs to be done to elevate the levels of treatment to give patients better quality lives.
Misconceptions about SCD are being demystified daily with increased sources of information online via forums, more and more people with/without sickle cell coming together to form support groups, medical tv shows addressing the subject and celebrity advocates spreading awareness about the disease are just some of the great things happening in the SC community now that brings hope to millions. Given the choice, I'm positive that living with any disease is not someting anyone would choose for obvious reasons but the reality is that we are but flesh and blood, living in a flawed world so these things happen and that's the worst thing. The best we can hope for is that advancements in medical science continue to provide answers and hope on how to treat, prevent and cure these diseases so that people may enjoy their lives. Personally, I'm grateful to the millions of scientists, doctors, medical practitioners and even individuals who work tirelessly to figure out best methods of treatment that are both effective, minimally or non invasive and geared towards helping patients live better quality lives.
It is my prayer that the government continues to provide support through funding and aid to organizations, research centres and labs dedicated to helping people all over the world with understanding the nature of the disease that is Sickle Cell. I hope that the conversation on finding even more treatment options for SCD does not stop until we can maybe even figure out how to replace the defective sickle red blood cells entirely and successfully with no hope of them returning.