Hey everyone. I just got this link on some research conducted at John Hopkins University related to sickle cell. The article talks about Chemotherapy as the new adjunct therapy in BMT patients...feel free to go ahead and read it.
According to Sophie Lanzkron, director of the Sickle Cell Center for Adults at Johns Hopkins University, 30 percent of sickle cell patients experience pain 90 percent of days. "This is a tough disease; they have intermittent episodes of excruciating pain — they can’t go to college or have careers. Patients spend their lives just trying to manage the pain.”
With no objective measure of the disease, Lanzkron said patients are frequently stigmatized when they seek medical attention — being mistaken for addicts in search of narcotics — and treated with disdain by emergency-room personnel unfamiliar with the disorder.
The physiological consequences of sickle cell anemia include severe damage to organ systems, particularly to the kidneys and lungs, and can reduce life expectancy for those with sickle cell to the mid-40s. Complications include life-threatening infections and stroke — even in young children.
Children who suffer intermittent attacks miss school with predictable consequences for their lives and for their futures. Meanwhile, their caregivers must miss work to tend to them. Added to this are the health-care costs. Sickle cell patients, Lanzkron said, are often “understandably depressed."
Okay, I know I'm the exception and not the rule, but my life isn't as miserable as this sounds. I went to school, got a degree, have a great, demanding job as a nurse and balance a full life. I think that part of the stigma of sickle cell is also purported that those that 'know' about the disease and the sickle cell patients themselves. Sure, it's not a walk in the park, but it's not a death sentence either. Save me the pity party...I'm not buying any of it.
My life is as vibrant if not more vibrant that my siblings and friends without sickle cell...and yours can be too. Please don't let the dour tones and gray color your views on life. We are not invalids. We just have a painful condition, but with balance, good lifestyle habits, medication and support, it can be controlled. Having sickle cell is not the end of the world.
I'll jump off that soapbox for a moment. The article goes on to talk about Patricia Newton, one of the first cured sickle cell adults. Good for her! Congratulations Patricia. The more I read about Bone Marrow Transplants however, the more I realize that it's not for me. Not only is it undeniably risky, most adults can't find a good match due to the high number of transfusions we've had. Add on the chemo, the long hospitalization (sometimes up to a year), and the lifetime of taking steroids and immuno-suppressant drugs, and it just sounds like the benefits don't outweigh the cure.
Perhaps I would think differently if I was a different sort of sickler. After all, I only used to have pain 85% of the time, and I only had a major crises every 3-4 months. And now on Nicosan, crises and hospitalizations are a distant memory. I don't think I'm the right person to advocate BMT right now...I'm just in a really, really good space.
Sickle cell is not a death sentence. It's not the end of the world. Having sickle cell is like having any other disease, learn it, deal with it, survive it. Don't let your condition own you.