By Patrice Rivers
“The Black Disease”
“The Invisible Disease”
“The Silent Killer”
These are just a few of the names associated with Sickle Cell Disease. A lot of people are unaware of what it is and who is affected by it. Well let me first tell you that SCD ISN’T a “black disease.” There is no such thing as a “black disease.” However, SCD mostly affects African-Americans in the worldwide community and because mostly African-Americans are affected by it, the awareness and education about this disease is tremendously lacking because communities are not well informed. Besides African-Americans, those ethnic groups affected by SCD include Caribbean, Hispanic-Americans from Central South America, Asians, Indians and people of Mediterranean descent.
“What is Sickle Cell Disease?”
SCD is a genetically inherited blood disorder that attacks the red blood cells in one’s body. Because this disease is inherited by two parents carrying the hemoglobin “s” cell, not everyone can just get this disease like cancer or HIV. It isn’t passed from one person to another like a cold or the flu. With SCD, one parent can have the full blown disease, while the other parent can have just the trait. Or, one parent can have the disease, while the other parent doesn’t have anything at all. There is always a 50/50 chance that the child will either have the disease, the Sickle Cell trait or nothing at all. Now, let’s back track and allow me to explain the diagnosis of SCD and the meaning of Sickle Cell Trait.
How is SCD diagnosed?
When a child is born, there is a simple blood test to screen whether or not the child has the disease. The technology now is simple and can be determined right away, even before birth as well.
Sickle Cell Trait:
Unlike the actual disease, a child with the SCT will only inherit one sickle cell gene from one of the parents. A person with SCT can live a normal life as well and have a few uncommon health-related problems.
There have been a lot of scientific studies and terminology stating that a child living with SCD won’t live past the age of 13. But guess what? There are adults with the disease in their 60’s who are doing fine and living a normal and healthy life. Why stereotype people and tell them when they will die when that is God’s job only! The complications from SCD varies with each person including the ones that suffer a lot of pain and acute crises struggling in their life. I’ve seen a lot of people die from complications, this is why educating others about SCD and SCT are extremely important. A lot of people know about breast cancer, heart disease, colon cancer, diabetes, HIV, AIDS and other diseases, but why not SCD? Once again, I stated earlier that SCD affects those of African American descent the most, therefore, it isn’t talked about a lot in communities and colleges. And because anyone can get heart disease, cancer or diabetes, people usually know more about it. Some of the complications from this disease are pain, loss of vision, hand-foot syndrome, acute chest syndrome, leg ulcers, infections and many more. Pain also known as “pain episodes” is very common with people living with the disease. Everybody living with SCD has different types of pain. Some may experience pain in their lower or upper back, in their joints, bones, and feet or even in their hands. When the normal red blood cells starts “sickling,” they can cause a “traffic jam,” blocking off the oxygen in certain parts of the body where pain occurs or it can lead to an acute chest syndrome which can be deadly. A person who is suffering with acute chest syndrome suffers from chest pain and difficulty breathing. Getting admitted to the hospital would be the best thing so that they are treated properly and given the right medication for it. I myself almost died from a pain crisis that was very severe at the age of 12.
Yes, I too am living with SCD in which I was first diagnosed at the age of one. Back then in the 80’s they didn’t do screenings and the education of SCD was low. In my younger years, I suffered from severe pain which I ended up in the hospital a lot. The pain was real and unbearable; it was worse than a tooth ache or a headache. An Aleve will not work in a vulnerable time like this! Treatment for pain can be prescribed through doctors; this includes a chemical-based experimental medicine called Hydroxyurea that decreases the amount of blood transfusions and pain crises. I have been taking this medicine since I was twelve and it has been working great. Over time I only had one “small” pain crisis and had one blood transfusion. I haven’t been hospitalized since 1999 and I thank God for that.
Is there a Cure for SCD?
There have been studies that performing a bone marrow transplant to gather healthy stem cells can be a case of a “true” cure. However, there are some high-risk and life threatening side effects or even death. Although this can be a very risky process, it can be done and it has been done. I remember working at the Sickle Cell Association near me and one of the patients younger than me decided to do a bone marrow transplant. She went through with it then started having some complications from it and later on died. She was in her early 20’s.
How can someone with SCD live a healthy lifestyle?
There are many ways that a person living with SCD can stay healthy. Drinking plenty of water is definitely one of them. It is important that anybody living with the disease doesn’t suffer from dehydration or over-heating. It has been recommended that drinking eight to ten glasses of water a day should be done. (I barely drink three bottles!) Getting regular check-ups and medical care at least once or twice a year is important so that you can maintain a healthy blood count. Eat healthy and participate in a physical activity without getting overly tired. It will help someone with SCD to remain in shape and have a good definition in their legs and joints. Another way to have a good healthy lifestyle is, not getting too tired or too cold or too hot.
If you want to learn more about SCD, please visit the website https://www.cdc.gov/ncbddd/sicklecell/index.html There are ways you can volunteer and help out SCD. Find your local Sickle Cell Association chapter in your area and ask about volunteer opportunities. Volunteering at annual walks and participating in workshops are all great ways to educate yourself on the disease. Donations are always welcomed and appreciative. You can always donate to the national chapter which is the Sickle Cell Disease of America at https://www.sicklecelldisease.org/