The Challenge for African-Americans
Thirteen-year-old Angel is suffering from a severe pain crisis. Her mom carries her into the hospital because she cannot walk. Twins Joshua and Jordan, high school freshmen, experience similar pain episodes and are hospitalized about five times a year. All three have sickle cell disease. Angel, Joshua and Jordan depend on blood transfusions to help them battle this devastating illness. Yet donated blood might not always be available for them.
What is Sickle Cell Disease?
An inherited disorder of the red blood cells, sickle cell disease is the most common genetic disorder in African-Americans. People with sickle cell have red blood cells that contain an abnormal type of hemoglobin. Instead of their normal round shape, red blood cells are crescent-shaped and have difficulty passing through the body’s small blood vessels. This eventually damages vessels and tissues, which can be extremely painful.
Sickle cell disease is one of the most common inherited blood disorders in the United States, affecting one in 500 African Americans, while one in 12 African-Americans carry the sickle cell trait. About 90,000 to 100,000 people in the US suffer from sickle cell disease – 98 percent of whom are African-Americans.
Patients with the disease – most of whom are children may need 15 to 25 blood transfusions each year. Often, they develop antibodies to the blood they receive, leading to potentially life-threatening transfusion reactions. But, if they can receive blood that’s more closely matched to their own, that risk is minimized. And the best matches are found among other African-Americans.
In addition, African-Americans face other serious health challenges that may require blood transfusions, including kidney disease, high blood pressure and higher birth rates of premature babies.
Following is a chart of the rare blood traits and the probabilities of finding those rare traits in African-American and Caucasian blood.
|Rare Trait (Negative from Factor)||Probability of Finding Rare Trait|
|In Caucasian Population||In African American Population|
|U||None Found||1 in 250|
|Js(b)||None Found||1 in 319|
|Cr(a)||None Found||1 in 6,429|
|At(a)||None Found||1 in 16,400|
|Rh17||None Found||Not established (extremely rare)|
|Jk(b)||2 in 10||5 in 10|
|Fy(a)||3 in 10||9 in 10|
|Fy(b)||1 in 10||8 in 10|
Blood Types of the Population
While Type O positive is the most common blood type. Not all ethnic groups have the same mix of these blood types. Hispanics, for instance, have a relatively high number of O’s, while Asians have a relatively high number of B’s. The mix of the different blood types in the U.S. populations are:
|Blood Type||Caucasians||African Americans||Hispanics||Asians|
(source: AABB Technical Manual)
Donating Blood is the Answer
To meet the needs of patients, we must collect more than 150,000 pints of blood each year. Yet, of those eligible to donate blood, less than 10 percent do. And of those who give, just three percent are African-Americans. The numbers just don’t add up.
We need more African-Americans to close the gap. We need more African-American blood donors to save lives in the community. We need you.
Donate blood at one of our centers or at one of the many blood drives we run throughout Northern California. After your donation, your blood is tested, typed and sent to a patient in need. You will also be automatically enrolled in our “Hero in Me” program where you’ll earn points that can be redeemed for gifts like movie tickets, e-gift cards and more! You will also have access to your wellness screening results, like cholesterol and blood pressure. Click HERE to see if you are eligible.
To be tested as a match for patients like Angel, Joshua and Jordan, please call 888-393-4483 and schedule an appointment to donate blood.
UCSF Benioff Children’s Hospital Oakland
Sickle Cell Awareness Blood Drive
Tuesday, September 20, 2016
9:00am – 1:00pm
Donor Coach in Courtyard behind the hospital
747 52nd Street
Oakland, CA 94609
Schedule an appointment now to help save lives.
You can help save lives by donating at any blood drive or donor center. Search for a blood drive near you!
Recognizing our Heroes
Remembering John “Larry” Valley
October 4, 1945 – January 5, 2012
Following is an excerpt of a touching letter, John “Larry” Valley wrote about sickle cell disease and the impact on his life. Larry was a member of the Sickle Cell Community Advisory Council of Northern California and an advocate for community blood-banking. Sadly, he passed away on January 5th, 2012, at age 66.
This letter and Larry’s passing serve as reminders of the fragility of life and that, more than ever, we need to bring awareness to the community about sickle cell disease and the need for blood donations.
My name is John Lawrence Valley, known to most of my friends and relatives as Larry. I was born on October 4th, 1945. I have Sickle Cell Disease. My type is SC Harlem. The Harlem was identified by the Atlanta Disease Control Center. My primary doctor that sent my blood to the Disease Control Center for evaluation saw something about my type of SCD that was different than any type he had seen previously. Simply the Harlem strain (only seen in myself and one other SCD patient in the U.S.) makes my Sickle-Hemoglobin C Disease (SC) type act like Sickle Cell Anemia (SS).
I had a fairly normal childhood. My family never put any limits on me, so I did most things that normal boys did. I was never told no or you can’t because of your SCD. I played little league baseball, I played golf starting at the age of 7, and I still play golf currently. The two limitations I remember are all of the pain episodes and being small. After little league baseball I could only play in pick-up games. I did not start growing until after the age of twenty-one. I was four foot ten and weighed eighty-five pounds when I graduated from high school. So my varsity attempts at sports were narrowed to golf because of my size. I remember having a lot of crises that involved severe pain in my lower back. I had other crises but those back aches were just really bad.
I worked for over 30 years. I was limited to desk jobs, physical labor was not an option, small and physical exertion can cause a crisis. I had physical limitations on my jobs, other than that I did all that was requested of the job description. I did have some crises at times while in the work force, and I learned to get up and go to work as soon as the crisis pain subsided to a tolerable point. I worked hard and was responsible for installation of hardware and software all over the country.
Having a good work ethic a high pain level tolerance allowed me to get the job done. My motivation has always been that I am just as normal as the next person within the limits of my disease. I believed that I was normal with the exception of the crisis that kept me off my feet.
In 1995 I turned 50 years, half a century. I was told I would not make it to the age of 21. Funny how that works. I tried to drink up the entire state of Washington between my 18th and 21st birthdays. That pretty much ended my faith in Dr.’s and their diagnosis.
Since then I have had two very good physicians over the years that have kept me in the race. Even at 50 I had my own ideas about how I should live with this disease. I have not always been correct but I am still here doing it my way within the limitations of Sickle Cell Disease, (SCD). The most important lesson I learned from my mother was “every time you get knocked down, get up and keep on going. Don’t grovel when you are down, get up and give it everything you have.” That is pretty much the way I have lived with this disease. There was one time when I really wanted to throw in the towel in my early 20’s. That was the worst crisis I ever had, my saving grace was my cousin who also was afflicted with this disease. He was very instrumental in keeping me alive during the first 7 days of that crisis. He passed at the age of 45. He also is the one who taught me more about this disease than any physician. He also made me see the importance of living within the limits of the disease rather than push the envelope.
Since the age of 50, there have been some physical changes that I did not know were happening as I aged. The first noticeable change came to my knees. I walked a lot, being an avid golfer I was walking a golf course about once a week or more. I began having severe pain in both knees if I walked too much. The medical finding was no cartilage in the knees. My knee bones were rubbing against each other. Some nerve endings were quite sensitive for a long time. I still take walks with my dog. I ride a cart when I play golf these days.
At the age of 60 I was having a lot of pain in my right hip. This is when I learned that longevity with SCD comes with joint, bone, and organ deterioration. I don’t have many crises now, but the accumulation of them have deprived parts of my body with oxygen deprivation. The deprivation kills the parts of the body that are not getting oxygen during a crisis. So that explains the knees and that hip pain. I never did anything about the knees, just lucky about being able to still walk. I can’t do any deep knee bends though. At the age of sixty I had my right hip replaced. Now at the age of Sixty-Five I have lost the inches in the length of my right leg. I have constant pain in that hip that was replaced. The pain is in two areas, inside the femur and in the groin area. The mobility recovered has allowed me to continue to play golf. I have not played as well with the new hip as I did with my own hip.
This year 2011, I had the ball of my left shoulder replaced. The rehab was tough. I am back on the golf course, and happy to say that I have played more golf this year than I was able to play in previous years. I have learned to enjoy being out in the sun with my relatives and friends having fun on the golf course. I was a competitive player when I was younger with a pretty consistent game. That is no longer the case. I miss it but I am happy to be able to complete each round no matter what the score.
I have also had deterioration in my kidneys, so I have to have them checked about every four months. Medical Physicians and Dentist’s take up a lot of my time keeping me healthy.
Another little item they call acute chest syndrome (ACS) got a hold of me and left its calling card. It provides some really intense pain in your chest. The first time it hit me it felt like an elephant was sitting on my chest. The more air you tried to take in, the more intense the pain. I felt short of breath and could only take in sips of air because of the pain involved. Seven days of that kind of pain and then a gradual lessoning of pain and eventually the pain settles like a knot somewhere in your upper body. I had at least three weeks of pain each time I had ACS. The first 10 days you wish time would speed up but it feels like it is standing still. I was able to get on my feet and function with the pain as it gradually decreased over the next fourteen days or so.
Living with SCD is a constant learning experience. You have to make life style adjustments along the way in your life. Going from competitive golf to golf for fun is one example of that kind of life adjustment.
Another example of life style adjustment is how you spend your time. I left the work force at the age of Fifty-Seven. I came out on disability due SCD. Before that I had an intense job and I went back to college and acquired a Bachelor of Science degree in Business Information Systems. I was really pushing the envelope during that period of time. I was working 10 to 12 hours a day and some weekends. I was also traveling all over the United States for my company.
My SCD is affected by high altitude, sudden changes in temperature, Stress, cold weather and over exertion. When I was working I would push the envelope every time I flew on an airplane, every time I went to a place like Lake Tahoe, every time I tried to go swimming, and the over exertion from exercise and other sports activities.
Now when I fly over an hour or so I have to have oxygen on the plane. I try to stay inside on cold and rainy days. I try not to go to colder climates, I don’t go to Lake Tahoe anymore and swimming is out of the question.
As you age the trips to the doctor become more frequent. I have been told that my insides are equivalent to a 95-year-old. That is hard to believe when you look in the mirror and see a person that does not look 65. But whenever I look in the mirror I have to tell myself I am very old inside and I need to be careful of how I live now.
Between 60 and now, I have found that I have some arthritic joints that like to visit when it is damp and or cold. It is harder to stay warm; I attribute that to a more sedentary life style. The sedentary life style comes from a lack of energy. It does not matter what I do to try to increase your energy levels, the body only has so much to give now. Take that and like it or push the envelope and take your chances. I am learning to push gently if I push at all at this age.