My name is Constance, and I was born with sickle cell disease. On October 30, 2012, I was cured of sickle cell disease via the Stride-HCT bone marrow transplant. As you read about my experience with sickle cell disease, you’ll learn more about how this disease impacts people like me. I hope that as you read my articles, you will gain a better understanding of what it is like to live with a chronic disease that causes you chronic pain and is invisible to the naked eye but as clear as day under a microscope.
I want to give you a little backstory on the disease and what triggers us. Sickle cell disease is an inherited, genetic blood disorder that affects the red blood cells’ ability to carry oxygen throughout the entire body. The deformed cells, or sickle cells, have trouble moving oxygen throughout the body because of their shape and often get stuck. Every place where the cells get stuck causes pain. When you are in pain with sickle cell, you call it a pain crisis, or just crisis. The pain varies in location, intensity, frequency, type, and so on. Every single person who is born with sickle cell disease is called a sickle cell soldier or a sickle cell warrior.
Every single sickle cell warrior is different; however, we all share triggers that will launch us into a pain crisis. With sickle cell disease, you have to be proactive and reactive with how you manage the disease. The first step in being proactive is knowing your triggers. Common triggers that sickle cell warriors have include:
Dehydration
When your body is dehydrated, your veins constrict. This restricts the flow of blood in your body. When you have sickle cell disease, your banana-shaped cells have a much harder time moving through your body. The only way to combat dehydration is hydration. This means drinking your water, Gatorade, Pedialyte, and so on.
Temperature
Whether it’s in a home, classroom, or business, or if it is a change in the seasons, the temperature affects us. When we are too cold, our veins constrict to conserve heat. When we are too hot, we get dehydrated. When we get dehydrated, our cells have a hard time moving through the body, which triggers a pain crisis.
Stress
Stress is the No. 1 silent killer in America. In healthy individuals, prolonged stress can lead to cardiac arrest, heart attacks, strokes, and so on. Overall, stress is not good for your body, period. For me, I experienced so much stress that I had to take medication to help me with the stress, anxiety, and depression of dealing with sickle cell disease.
Physical exertion (working out)
Physical exertion pertains to working out, sports, and activities that engage your body. With sickle cell, I still pushed my body to the limit. I didn’t let it hinder me or stop me; however, I listened to my body when it spoke to me. When you have sickle cell, you can participate in sports, but you have to know your body. I participated in color guard and the high jump in track & field. I had a modified practice and workout regimen, but I was still able to do what I wanted.
Changes in altitude/barometric pressure (flying/scuba diving)
Another big trigger for sickle cell warriors like myself was changes in the atmosphere and changes in the pressure around my body. Whenever I flew on a plane, I made sure I had my pain medication. Although I never had a crisis because I was flying, I could feel that the atmospheric pressure around me changed, and my body would ache a little.
Infections
When you are born with sickle cell, you have a compromised immune system. This simply means that your immune system is weaker than a normal person’s. When we get things like infections, we have to make sure they are treated as soon as possible because one infection can lead to bigger and more serious problems.
Salt consumption
Salt dehydrates you. And if you are anything like me, you love eating salt! Although salt is not an immediate trigger in and of itself, if you’re already in pain and you start eating straight-up salt, it will cause you problems. With that being said, I loved salt and I craved it sometimes. Whenever I had a crisis, my parents, doctors, nurses, and dietitians wouldn’t give me things like saltine crackers because they behaved like a diuretic, causing your body to expel urine (much-needed hydration).
Caffeine (use personal discretion)
I had to be extremely careful with my consumption of caffeine. Coffee, energy drinks, and certain sodas contain caffeine. Now caffeine is not 100% bad. However, it is highly recommended that you avoid it as much as possible because it can contribute to dehydration. I personally avoided coffee, energy drinks, and anything that contained caffeine because when I had a really strong espresso shot, I could feel the pain shooting up my back. I immediately went into a mild pain crisis and had to address the pain immediately with my prescribed narcotics.
Alcohol (use your own discretion)
I was 25 years old when I had my bone marrow transplant. I didn’t let sickle cell disease stop me from having alcoholic drinks or shots. However, if I didn’t pre-hydrate and then continue to hydrate as I was consuming drinks, I would pay for it by having a pain crisis. For me, the keys to drinking alcohol are moderation and hydration.
My biggest triggers for a crisis were dehydration, stress, high and low temperatures, physical exertion, and water (getting wet/staying wet). I will talk more about that later.
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