Living With Sickle Cell Disease

Written by Brandon P., patient at Connecticut Children’s

My name is Brandon and I am a 19 year old young man who has been living with sickle cell disease my entire life. I was born with this disease on January 7, 1995. Currently, I am a sophomore at the University of Connecticut, where I am aspiring to graduate with a major in Finance to achieve my ultimate goal of becoming a Chief Financial Officer (CFO.) In addition, I work part-time at State Farm Insurance in Bloomfield CT. Lastly, I am very involved in my church. I am the choir director for the youth department, I teach Sunday School for teenagers and am the president of the youth ministry. Juggling all of my activities can be challenging at times; however, I don’t let my disease control or run my life.

My journey with sickle cell disease has been a long and painful one. To begin with, sickle cell disease is a hereditary blood disorder that causes severe pain and other medical problems. Patients with this disease have “sickled shaped cells” compared to circular cells like everyone else, which causes a blockage of blood flow and leads to the pain crisis. Not only do we have pain, but we are prone to infections and an increased risk of death. However thanks to medical advances, death due to sickle cell disease has significantly decreased.

My personal experience with this disease has had its ups and downs. Due to my disease, I’ve had numerous hospitalizations as a result of a crisis or infection, several doctor appointments and a handful of surgeries. My hospital stays, when I need to be admitted, normally last no longer than 10 days. My medical team says that I have a high tolerance for pain, so if I come in for pain, everyone knows it’s bad. There have been times where I can’t even move due to the unbearable pain I have to deal with. Not only is it a painful experience, it occasionally comes with other unforeseen medical consequences. Like I mentioned before, sickle cell patients are prone to infections. I have had numerous infections and three of them required surgery! Even though surgery can be a scary thing to look at, it helps that I felt safe and comfortable with all of my procedures and my medical team was there for me every step of the way.

Because of my medical team, everything seems to be a lot easier. I am treated regularly at the Center for Cancer and Blood Disorders at Connecticut Children’s Medical Center, and yes even though I am 19, I still get treated here. I know that I have the best medical care there is because there have been instances where I have been as far as Barbados on vacation, and they would do everything they can to get me back home.

To elaborate further, I was on vacation with my dad in Barbados, and I got sick there. We decided not to go to the hospitals down there because we felt uncomfortable getting treated there for my disease. We called Connecticut Children’s and we spoke with Dr. Boruchov who is my primary hematologist. She was extremely patient, understanding and thoughtful of the needs and concerns that my dad and I had. She didn’t just exemplify these qualities during this experience, she exemplifies this all the time throughout the years she’s been treating me. Not only is Dr. Boruchov wonderful, but my nurse Melissa has been there since I first arrived at Connecticut Children’s. Usually I am a hard stick, but 98% of the time, she gets the vein on the first try. There have been times when I needed to go to the ER, but I would go to the clinic for Melissa to start my IV. She has always been there, and whatever I needed she would always volunteer to help me in any way that she can. Even my social worker Nancy has been there for me and my family. She has helped us when we haven’t had the strength to fight. She is always giving me ideas to help better manage my care. Overall the entire Hem/Onc team has been a major part of my life, and they are like my second family.

Thanks to the staff at Connecticut Children’s, I’ve been successful in managing my sickle cell. The major thing that I have to do is drink plenty of fluids to keep myself hydrated. Hydration is key to help reduce the amount of times I have to go to the hospital. Not only is hydration important, I have to make sure I take all of my medication on a daily basis. These two things combined, I think, are the major parts in managing my sickle cell. Not only do I have to take my medicine and stay hydrated, I also have to dress warmly because significant weather or pressure changes can send me into a crisis. Lastly, I have to make sure that I get plenty of rest, eat healthy and exercise.

Even though living with sickle cell may be a set-back, I still consider it a blessing because I can only believe that living with this disorder will only make me stronger to achieve my goal of becoming a CFO of a Fortune 100 company.

September is sickle cell disease awareness month. The mission of the sickle cell provider and family advisory board is to improve the health care of children with sickle cell disease by adopting a philosophy of family-centered care at Connecticut Children’s Medical Center and assuring care is based on best practices. About 1 out of every 375 African American babies is born with sickle cell disease. Sickle cell disease affects about 70,000 people in the US and more than a million people worldwide. Sickle cell disease is genetic (passed through families). It is not contagious. Sickle cell disease affects the red blood cells. Sickle cell disease is a lif-long condition that can be life threatening. The course of this blood disorder, and its complications, vary from person to person.

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