THE FEARS ASSOCIATED WITH HAVING SICKLE CELL DISEASE
It goes without saying that death is the main fear associated with having Sickle Cell Disease for sufferers and their families and my last post exposed some of the life threatening complications that make this fear even more real. However, sickle cell sufferers live with other fears that come with their condition and if improperly attended to could potentially make their already delicate health issues worse.
Mental stress and the anticipation of pain could trigger episodes of something called vaso-occlusive crisis ( which is a common painful complication of SCD in adolescents and adults). Studies have also shown that when sufferers go through emotional stress, it has real health outcomes that pertain also to the risk for vaso-occlusive crisis. One study also revealed that when participants with SCD were told they would experience pain from a research being conducted, investigators observed a 20% decrease in blood flow when the patients experienced stress in anticipation of feeling pain. In other words, when sufferers of SCD feared that they would experience pain, it significantly decreased micro-vascular blood flow.
- Managing work and career: this is due to unpredictable and lengthy absences, struggling to keep up at work or not being able to work at all. This was one area in particular my brother really struggled with.
- Caring for themselves and their families
- Maintaining relationships
- Emotional Impacts: which includes being able to manage finances as a result of all the medication and treatment involved with having this disease.
- Weather sensitivity
- Medication dependency
- Getting ideal treatment: in the sense that the medical community needs to focus more on targeting the underlying disease like addressing the tissue damage that occurs with every crisis, the duration of sickling events, treatments that stop pain crisis at its onset and the underlying anemia.
The topic of SCD is such a broad one that sees medical practitioners, sufferers and their families, advocates and charitable organizations desperate to find more effective ways of not just managing pain and crisis through drug use and non-drug therapies but eliminating all the fears associated with the disease. It is already disheartening that sickle cell anemia's only known cure is the bone marrow or stem cell transplant, which is a major undertaking that carries serious side effects and therefore in itself elicits a fear that is ultimately difficult to alleviate. This was the route we were going with my brother before it became too late and it was looking like my mom was the closest match to him since none of his siblings (who are usually the ideal donors and in this case, would have been any one of my sisters or myself) were appropriate donors. My younger sister obviously has sickle cell as well so she was ruled out as being a match, my elder sister was breast feeding at the time and was determined an inappropriate donor because it would have been too risky a procedure for her and I was not enough of a match to be a donor either.
As a community, we can only be supportive and understanding of their reality and do all we ca to make life as easy and stress free for them as possible.
As always, I thank you for stopping by today and trusting that we are all becoming more and more aware and empathetic to others who are battling any kind of disease at all.