Sickle Cell Disorder is the most common, yet the least talked about genetic disease. Sickle Cell is more than just a “Black disease”. It affects people from Mediterranean countries, central and South Americans, parts of the Caribbeans and South Asia. It’s just more common among people of African descendants. Whether you consider yourself Black, African-American or other, you are included.
Sickle Cell is a disorder that is genetic. It is inherited from parent to child. There are multiple ways the trait or the disease can be passed. The table below, shows the chances of a child being a carrier of the trait, or them having the actual disease.
What is Sickle Cell?
Sickle Cell is a blood disease. It effects the hemoglobin and changes the way the red blood cells carry oxygen. The sickled cells are crescent shaped and are more likely to have a hard time traveling through the body to carry oxygen. This can also cause blockages in the blood vessels and stops the oxygen from being carried to other parts of the body. This is the beginning of the chronic pain the individual feels.
Each individuals set of symptoms vary person to person. Some have very barely any to mild symptoms, while others have the more serious symptoms that land them in the hospital frequently. Sickle Cell leaves the body open to infections, kidney and liver failure, pneumonia, heart attack, stroke, pulemonray hypertenstion, blindness and heart failure.
There are frequent blood transfusions. Extended stays in the hospital. Some women are told not to have children, that their bodies and their medications make it almost impossible to carry and deliver a healthy baby. Some are told that their bodies couldn’t handle it. And their life expectancy now, thanks to technology and medication, is 40.
Sickle Cell Has Affected My Life In More Ways Than One
I have known this girl since the age of two. We became very close when we first met. This was waaayyyy before any Sickle Cell diagnosis. This girl, my warrior, is my cousin.
By the time we hit 5/6 years old. I knew that there was something different about her. She was treated different. She was ALWAYS at the hospital and complaining of pain. But at that age, I honestly didn’t understand what was happening to her, I never really knew what was really going on.. By the time I hit 10/11, years old. It was called her “crisis”. Whenever she would end up in the hospital, sometimes for weeks at a time. It was for her “crisis”. By the time I was 13/14 years old, I finally had a name the genetic disease that was destroying my cousin. But I still didn’t understand what it was. I just knew that she had sickled blood cells that caused her pain. And that’s why she was always in the hospital. The older we got, the more she was in the hospital. The more we felt that something wasn’t right… The more questions we asked, the less answers we got… And we really didn’t understand why…
We both had our kids in 2011. Her son, was born in January and mine in April. And we definitely bonded over that experience alone. After we had our kids, I noticed a difference in her. I noticed that she was in the hospital more often. She even had pneumonia a few times. She was having constant blood transfusions and was in the hospital for months at a time. A few years pass, and it’s 2013.
Life as we knew it, changed. My cousin was admitted into the ICU on the 21st of June. Over the course of the 6 days she was there, she suffered from kidney failure. She had to have two blood transfusions and dialysis was done twice. And it did nothing to help her. She had seizures, and ultimately, She passed away of organ failure on the 27th of June.
Watching her, live her life. I now understand the importance of the small moments. I understand the power of words left unsaid, and why every “I love you”, means something more than the one said before.. I learned all of this from her.
Know your status. Get tested to see if you are a carrier of the trait. Know your child’s chances of carrying gene. If you know someone that is fighting this disease, show them support. They are fighting for their lives EVERYDAY!!!
Please understand that life is very, very short. Live your life in a way that will make the people left behind to remember you, proud. Take care of your bodies.
Love more, pray more, live more.
Peace & Blessings,
NHJ
