Real Stories from People Living with Sickle Cell Disease | CDC

Real Stories from People Living with Sickle Cell Disease | CDC

Lance Jasper Jones’ Story

Lance Jasper Jones is 31 years old, is engaged to be married, is in graduate school pursuing a master’s degree in clinical psychology, and is a talented musician and music producer. He is also living with sickle cell disease.

In 1990, Lance was diagnosed with sickle cell SS, or sickle cell anemia, the most severe form of the disease. He was only 2 years old. Since birth, Lance has experienced chronic pain; as an infant, he cried all the time. While hospitalized for what appeared to be a broken finger, doctors ran some blood tests; the results showed that Lance had sickle cell disease. The news came as a total surprise. Lance was the youngest of three children. His sister, the oldest of the three siblings, did not have sickle cell disease or the trait for sickle cell disease. His brother had the sickle cell trait, but did not have any signs or symptoms of the disease, so no one even knew he had the trait until Lance was diagnosed.

Throughout his life, Lance has had numerous health complications from sickle cell disease. He has been hospitalized more times than he can count. The doctors did not expect him to live into adulthood. In middle school, Lance developed avascular necrosis (AVN), and was confined to a wheelchair for 2 years. AVN is a painful condition in which there is a loss of blood and oxygen to the bone, causing tissue in the joints to die. As a result of this complication, Lance will need to have a hip replacement before his 32nd birthday.  By age 22, Lance has already suffered two lung failures.

Challenges/Impact on the Family

According to Lance, no one in his family knew anything about sickle cell when he was diagnosed, and it had a devastating impact on his family. “The news altered my family dynamic in a major way. My mom, a nurse at the time, lost her job because she needed to stay home and take care of me. Her career goals were gone. My parents also had a separation period because of the hardships.” Having sickle cell disease also impacted Lance’s relationship with his siblings. “Every time I got sick and had to go to the hospital, they [my sister and brother] went to our grandmother’s house. To them, I received special treatment because I needed it and they got less time and attention from my parents. To me, my parent’s focus was always on keeping me healthy, not on my goals and dreams. My parents always saw me as the sick child. But with my siblings, they let them spread their wings.”

Getting Educated About Sickle Cell Disease

Lance’s mother did her research and got connected to doctors at Long Beach Memorial Medical Center. The biggest thing she had to learn, according to Lance, “was how to read the panel sheet–things like hemoglobin levels, iron levels, organ function.” Learning about sickle cell medications and how to administer them was also a high priority. This was especially important because Lance was one of the first sickle cell patients to take hydroxyurea, a drug that reduces pain crises in patients with severe sickle cell disease. In addition, due to a build-up of extra iron in his body (called iron overload) caused by monthly blood transfusions, Lance had to take a medication called Desferal at home that required an IV, which his mother taught him to use early on.

Transition

When asked how his parents’ role as caregivers changed as he grew older, Lance replied, “Their role didn’t change, I changed. As I got older, I became more knowledgeable and began to take my life and health into my own hands.  I made my own doctor’s appointments, and my mom taught me to fill out paperwork and order my medications.  I was prepared to read the paperwork and talk to the doctors.”

Finding Support & Giving Back to the Community

According to Lance, the biggest way that his mom supported him in school was to make sure he was able to get the necessary accommodations and time needed to make up assignments due to missed days at school.  She even arranged for tutors to come to his room when he was admitted to the hospital.  Outside of school, his parents got involved in walk-a-thons and donated money for sickle cell disease research.

Lance is extremely involved in the sickle cell disease community.  He is a volunteer for the Sickle Cell Disease Foundation of California and a mentor for SC Crew, a program that helps youth with sickle cell disease navigate their teen years.  As a mentor, Lance helps teens with sickle cell disease with things like getting their driver’s license, completing college applications, applying for scholarships, and transitioning from pediatric to adult care.  Lance was also involved with the passage of Assembly Bill Number 1105external icon, recent legislation to establish a network of five sickle cell disease clinics to provide comprehensive care to adults with sickle cell disease by shifting $15 million from the state’s General Fund budget to California’s Department of Public Health. “Passage of this $15 million dollar bill is a dream come true! And this is a model that can be taken across the country,” Lance said.

Tips for Others

Lance offers the following tips for those with sickle cell disease:

1. Be aware of all the signs. Pay attention at all times. With sickle cell, there are a lot of complications. You could be having a silent stroke and not even know it’s happening.
2. Do your research and know what you are dealing with.
3. Do not look at your condition as a death sentence. Have goals and make plans.  Do not let go of your dreams and do not let limitations keep you from doing what you want to do.  Sickle cell should not control what you do; it’s just something you live with.

CDC would like to thank Lance for sharing his story.