Originally posted 2011-12-23 13:01:28.
Last Friday, I took some time to reflect upon the passing of someone I thought the world of, my girl Cryssy. I laughed, cried and thought deeply about her memory and what kind of legacy what would’ve wanted to lead. And while I know she would’ve wanted all of us to have a good time in her name, I know that she and I talked several times about what I do here and what we both valued the most about the blog, which is the education aspect.
I blog about the things I’ve learned on my journey and I’m protective of it because it doesn’t just reflect tips and tidbits, but it reflects my life. I write about not drinking juice because I don’t. I write about and advocate for full fat foods because I eat them. With pleasure.
Because I’m greedy. I live, and living helped me reclaim my health. With health being a big part of what I write about every day, how can I connect that to the legacy that my friend left?
Then, it hit me. If I could help to use this platform to help shed a light on sickle cell anemia, just a bit, maybe she’ll smile down on my daughter and I.
I spent a lot of time reading
because I’m a nerd…er, because I wanted to help somehow, but I just didn’t understand. During my digging, I learned a lot that I’m pretty sure the average person may not know, so today’s Friday 5 is dedicated to Cryssy. Here’s hoping I do her justice.
That being said, let’s get down to bidness. Five things every African American should know about sickle cell anemia:
1) What is sickle cell anemia? Sickle cell anemia is a disease that affects blood flow and the delivery of oxygen throughout the body. Every living being has red blood cells, shaped similarly to doughnuts (we don’t do donuts here, but I’m saying’…) that flow through our veins. A person with sickle cell anemia, however, has blood cells shaped more like a sickle (a crescent moon), which not only creates difficulty in passing through the blood stream easily but also impedes the body’s ability to deliver enough oxygen to the body’s organs and tissue.
The anemia comes in because, while the average red blood cell can last about 120 days in the blood stream, sickle-shaped cells only last approximately 20 days, causing the body to exist without adequate amounts of blood cells, also known as “anemia.” Hence, the name of the disease, sickle-cell anemia. (It is possible to have anemia without the sickle-cells, and you can have sickle-cell disease without the anemia, though it usually follows.)
2) Prevalence: While sickle cell also affects Europeans from the Mediterranean, Arabians and Asians, a large number of sickle cell sufferers are African-American. 1 in every 400 African Americans suffer from sickle cell anemia.
Sickle-cell trait, however, is another story entirely.
Really quickly, to carry two alleles for a trait pretty much ensures that you’ll display the full expression of the trait. If you carry two alleles for brown eyes in your genes, you’ll have brown eyes. If you only carry one allele for a trait, then it means that the trait lies dormant – it is not expressed – and you are only a carrier for the trait. This is “fine,” unless you mate and procreate with someone else who is also a carrier for the trait. If you have four children with this person, probability assumes that at least 2 of those children will carry the sickle-cell trait, one child would be spared from the trait entirely and one child will develop the disease.
To carry sickle-cell trait, which basically means that you carry only one marker for the disease, is carried by at least ten percent of the African-American population in America. So, while we may not have the disease ourselves, it is possible that we could procreate with someone else who carries the trait and create a life that does. While many 80s babies and up are now tested for the disease – I’d like to say it’s required but there are lots of things that are required in health care that “everyone” isn’t receiving, so we need to be proactive about this – it’s still important to have a definitive yes or no regarding whether or not you, your partner or your children are carriers of either the trait or the disease.
It’s also important to consider the people we know and love who are as stubborn as a mule and simply refuse to see the doctor, even though they are feeling terribly lethargic, breathless, suffering from stomach pain and writing it off as eating bad food (which… never mind), feeling elevated heart rates and maybe even feeling a bit of pain in their bones, randomly. They might be suffering and not even know it, because of a lack of health care or, even despite having stellar health insurance, a fear of the doctor. (As much as I hate to admit it, we have a long, justified history of not trusting doctors.)
3) Sickle-cell anemia is treatable and curable. Sickle-cell anemia sufferers require frequent treatments as a means of trying to prevent crises from occurring. “Crises,” the name given to when a person suffers from a bout with immeasurable pain from the disease, are treated with blood transfusions to counter the anemia as well as pain medicines. It’s important for all of us to know that symptoms can be treated because it is possible for those of us who only carry the trait – not the full expression of it – to find ourselves suffering from symptoms, as well. It requires special blood testing, administered by your doctor, to determine if you carry the trait.
And yes, sickle-cell anemia is curable. Bone marrow and stem cell transplants can cure sickle cell anemia, but the problem is the lack of donors. Yes, people die every day because of a lack of donations.
4) Speaking of which, on to the donation process. It’s not like blood, where you just show up and extend your arm. With bone marrow, you first have to register as a donor. As a registered donor, you may be contacted as a possible match and at that point, if you’re comfortable with going forward with the process (you are a volunteer and are never under any legal obligation to comply), you’d be scheduled for testing to ensure that you’re the best match for the patient in question.
If you are a match, then you’d be informed about your donation, recovery from the procedure and any potential side effects. If you agree, then you’re examined to ensure that the donation process is safe for both you and the life you’re saving. From there, it’s the home stretch.
The donor never pays for the donation or any other expenses incurred. The National Marrow Donor Program donation recipient’s medical insurance covers medical as well as non-medical costs. Donors are also covered by a donor life, disability and medical insurance policy. Neither you nor your family will be financially burdened by your decision to help save someone else.
Donating marrow, according to accounts I’ve seen, feels something like getting a lower-back tattoo. Side effects of donating are anywhere from fatigue and lower back pain to bleeding at the collection site. A donor can experience pain that lasts from a few days to several weeks. Approximately 98.5% of donors feel completely recovered within a few weeks, while about 1.34% experience serious complications.
The peripheral blood stem cell donations, are a bit easier. From Marrow.org:
PBSC donation is a nonsurgical procedure that takes place at a blood center or outpatient hospital unit. For 5 days leading up to donation, you will be given injections of a drug called filgrastim to increase the number of blood-forming cells in your bloodstream. Your blood is then removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to you through the other arm. Your blood-forming cells are back to their normal levels within 4 to 6 weeks. To learn more, watch the PBSC donation video.
While only around 1 in every 540 of their registered donors in the Be The Match program goes on to donate, knowing the prevalence of sickle-cell anemia in the African American community coupled with (hopefully) an increase in donors, we should all hope to be able to help.
5) We can prevent this. While sickle cell anemia is not contagious, it is easily prevented by being careful with whom we procreate. If you procreate with someone who also carries the trait, you will wind up with a 1 in 4 chance of having a child with the disease. If you aim to be more careful with your family planning, there are means by which one can undergo fertility treatments that prevent passing the treatment on. Treatments are covered by insurance companies, because they’d rather pay to prevent passing the trait on than pay for a child that suffers from the disease. Here’s hoping you’ve got that good health care… because the downfall of all this is that it’s difficult to find someone to cover you if they find out you’ve got the pre-existing condition.
…but we don’t need comprehensive health care reform. Okay.
Please, if there is an inaccuracy or if I’ve misinterpreted something, here, please let me know by way of links, books, any resource other than anecdote, that way I can clarify and add resources for those who want to know more.
I have to admit, it felt good to write this.
What did I leave out?
Sources, of course:
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