If you are reading this blog, it means you are looking for information and/or options. Maybe someone you know is struggling with sickle cell disease... a child, sibling, friend, relative... Or, maybe you yourself live with sickle cell disease. Living with SCD, for many, feels like something between fighting a ghost and wrestling an alligator. It wears you down. You are always anticipating the next ER visit or battling a crisis you can't seem to get ahead of. You dread having to request time off work again, because your boss doesn't understand. You stress over how the bills will be paid having missed so many days at work. Your child gets anxiety about school and his/her peers' perception of his/her illness. Whatever your situation, it is stressful. For parents of children with SCD, the pain of watching your child suffer is probably the worst pain of all. You would do anything to make it stop if you could.
Fortunately, there are things you can do to positively influence your/your child health-related quality of life. The first thing is to understand there is no one solution that will affect every person the same. What works for one person my not work exactly the same for every person living with complications of the disease. The key is to understand what triggers of drives the symptoms. For example, two persons with hypertension may react differently to the same drug/treatment. It could be the hypertension is caused by kidney dysfunction in one person and cardiovascular dysfunction in the other. The symptom is the same, but the cause is different. The better approach would be to address the cause and not just treat the symptoms. There are other factors that could contribute to the treatment being effective or ineffective, such as, beliefs, compliance, etc..
One thing is true, the body is basically the same regardless of the individual. There are certain conditions under which the body will function well, allowing us to enjoy good health. Or, in the case of SCD, enjoy relatively good health. This blog will, in a series of posts, explore different options and approaches that may be beneficial to those living with SCD.
My personal experience living with sickle cell disease and being the mother of a child with sickle cell disease, has taken me on a path that has changed my health and life in very positive ways. I am very appreciative of the many doctors who care for and fight this battle with us to find a cure and ways of treating our symptoms. I am especially grateful for the knowledge I have acquired learning to stay ahead of my and my child's symptoms. Prevention is always the best cure. Join me on this journey...