Ever since I can remember, sickle cell disease has been a part of my life. Some days it was only a small part of my life and other days, like when I had a pain crisis, it was all consuming.
Even though I was in and out of the hospital a couple times a year when I was younger, my parents never let me feel sorry for myself. Nor did they allow the disease to define me.
It was that strength and positive thinking that carried me through high school, undergrad, and law school.
Now that I’m older I’ve come to realize that my parents weren’t just a positive influence. They were learners. Because I was the first person in my family to have sickle cell disease, they learned everything they could about it, so that they understood how to best manage my condition and limitations. The fact that they did that, had a tremendous impact on my quality of life growing up.
When I was a freshman in high school they learned about an experimental drug called hydroxyurea, and after learning about its potential benefits, signed me up for a clinical trial. Hydroxyurea increases the body’s production of fetal hemoglobin and reduces the sickling of red blood cells, which in turn reduces pain.
This drug, along with a positive attitude and resolve, have allowed me to live a fairly normal life despite having sickle cell disease. I’m now 30 years old, a lawyer, and the vice chair of the S. CELL, a sickle cell advocacy group. I haven’t been hospitalized since 2006 and only have 2-4 pain crises a year, thankfully.
I want other kids, teens, and their parents to read my story and know that it’s possible for them to lead “normal” lives and accomplish their goals as well. Through volunteer work I’ve noticed that this isn’t a common outlook. Most of the people I speak to at community events fall into four categories: they know nothing about it; they think people with sickle cell disease won’t live past their teenage years; or they have incorrectly heard about sickle cell trait preventing people from playing sports. The fourth category is related to the parents whose children have sickle cell disease. Most of them are surprised that I have survived as long as I have, and are shocked when I tell them that I’m a lawyer.
I think when some families receive a sickle cell disease diagnosis, they lose hope. I feel incredibly fortunate that my parents never let me feel that way and because of that, I feel compelled to help others see that having sickle cell disease does not mean that you can’t live a normal, fulfilling life.
One of my main goals through my volunteer work is raising awareness of sickle cell disease and helping patients to have a better understanding of their disease. Here are the main points that I like to touch on when speaking to other individuals with sickle cell disease:
Learn about your disease.
Sickle cell disease can be a little bit different for everyone. Learn everything you can about your particular situation from your doctor, then learn more by researching it online. Good resources are: the Sickle Cell Disease Association of America, the National Institutes of Health, and the Sickle Cell Information Center, and livewellwithsicklecell.org.
My parents also attended educational sessions held by Cincinnati Children’s. The knowledge gleaned from there, in my opinion, is one of the main reasons why my parents never lost hope or allowed sickle cell disease to define me. More information about educational offerings through the Comprehensive Sickle Cell Center can be found here.
Understand your limits, but don’t let them hold you back.
It’s important to learn what your limits are from your doctor, and to follow them. However, at the same time, and within reason, don’t automatically think that because you have sickle cell disease you can’t do something. A lot of people assume that because someone has sickle cell disease, he or she can’t play any sports at all or participate in extracurricular activities that have physical requirements. This isn’t always the case. For those who want to play sports, it’s important to consulting first with your doctor and discuss guidelines for hydration and rest.
Limit stress by taking care of yourself.
Stress can exacerbate pain from sickle cell disease. So I recommend that patients with sickle cell disease do all of the right things to maintain a healthy lifestyle. Sleep well at night. Drink plenty of water. Eat a healthy diet. Exercise. Limit the stress in your life wherever you can. Completely avoiding stress in life is impossible, but these efforts will go a long way in helping you avoid pain episodes. The moments in life where I have had some of the worst pain have been my most stressful moments, like taking the bar exam.
Stay positive.
I can’t place enough importance on staying positive. I never had doubts about my future and I have my parents to thank for that. Sickle cell disease has always been a part of my life, but it’s never played a starring role. My parents never let it define me or prevent me from fulfilling my dreams. Even when I was younger and in the hospital, they would bring me my homework to complete – life continued on despite setbacks. They never let sickle cell disease win.
Thanks for sharing. My daughter is 2 and has sickle cell anemia. She currently gets monthly transfusions but is a candidate for hydroxyurea, your story was very encouraging as I’ve had my reservations about the medication.