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."
Read the rest of the article HERE
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.
4 comments:
Stem Cell Transplant might change your mind. Take your own sickle cell stem cells (you have had a blood draw before, so you know what I mean) correct then to normal cells (non-sickle cells) in a test tube. Grow them to multiply to many millions and then transfuse you with your own corrected cells.
It is that simple (theoretically) and no need for dangerous parts of bone marrow transplant. The risk is minimal.
D
(Please support Sickle Cell Research)
http://www.scdrffmall.com
I really like your blog, and its positive outlook on SCD. Too many people take adv. of illness, but your energy is contagious. Thanks for doing what you do. Would be back to visit.
Our 14 year old son had severe SS Anemia.On March 5,2008 he had a Bone Marrow Transplant.His brother died at the age of 2 from SS. Yes, there was a certain amount of risk, but that risk was most def worth trying to not only save his life, but giving him a much better quailty of life.It was by far not a walk in the park, but in the end has come out SS Free! Hopefully more of our people will ask their doctor for information and educate themselves on transplants for SS. Thank you for letting me share our blessing! Be blessed!
I, like you, led a productive life with SCA. I am educated and I travel the world. However those infrequent crises every year were intolerable and only get worse with age. At 34, the prospects of a cure, no matter what the risk, seemed like a dream come true.
I am the third patient, with Pam being the first, to go through the bmt program at Hopkins, and I'm telling you it was worth it. I can run 5 miles, I can swim in the cold if I want, but most importantly I am moving to London for grad school next year and don't have to "worry" that SCA will peak it's little head out once again and take days out of my life.
It's not for everyone - agreed. I'm blessed that my adult brother was a 100% match. Although the process was very difficult (they basically break you down before they build you back up again) I would say the year I committed to my cure was a life changing decision.
For details of the year (6 months before and 6 months during) visit my blog at: www.becauseyoucantvisit.blogspot.com
I'm also working on a documentary about this experience. Contact me with any questions about the transplant or life post SCA via the blog.
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