This is especially true for people living with a rare condition known as sickle cell disease (SCD). SCD in an inherited, lifelong blood disorder that causes the red blood cells to be crescent (“sickle”) rather than disk shaped. In the US, there are approximately 100,000 people living with SCD, with African-Americans commonly both diagnosed and/or carrying the genetic trait. SCD can not only be an extremely painful disease to live with, but it also comes with an average life expectancy of 40-60 years old. For people diagnosed with SCD, age is a big deal. All of a sudden, “mid-life” may mean your twenties and “later-life” planning could potentially come before your first gray hair.
However, while there is no current cure for SCD, the community has been filled with hope in recent years as more and more people with SCD living to adulthood thanks to better disease management. One such person is Marjorie D., a physician, who now at 43, has been living with SCD for nearly 20 years. “I’m a patient 24 hours a day,” says Marjorie. “There isn’t a day that goes by that I don’t experience some form of pain in my body.” In some ways, for Marjorie, her SCD diagnosis came as a relief. “We were finally able to put a finger on [the pain],” she says.
SCD causes blood cells to change shape, and the change in shape essentially causes these blood cells to get stuck. “Think of it as a one-way street where all the cars are going one direction and suddenly one flips over — nobody is going anywhere until that one car gets extricated,” she describes. “So until that one cell is removed or dissipates, you’re going to feel pain in that area for the duration — a duration that could be a day or even a month.”
For anyone facing similar health issues, Marjorie’s experience offers a great perspective for making the most of, and perhaps even extending your years with a rare chronic illness such as SCD:
Become your own teacher: Being diagnosed with any condition can come with a flood of questions and doubt. “At the time, I had no information and I didn’t know anything,” she recalls. She says self-education is key — “you have to keep reading, keep digging, ask tons of questions and don’t be afraid to do as much research as you can.”
Surround yourself with love and support: Having a strong network of family and friends you can lean on is critical to managing a chronic condition like SCD. Whether it’s talking to a loved one about what you’re going through, being open with your doctor about specific challenges you’re facing, or finding others who are going through the same thing as you, help can come in many forms. “Advocacy organizations have made such a difference in this community,” says Marjorie. “We know we aren’t alone and sometimes that’s the most important part of managing the ups and downs with this disease.”
Stay on top of the day-to-day management: You may have to prepare yourself for frequent visits to the doctor and complex treatment plans. “As both a doctor and a patient, I know first-hand the importance of being a good steward of your own health,” says Marjorie. “I try to ‘practice what I preach,’ by listening to my healthcare team, keeping up with my appointments, following my medication regimen closely, and trying to maintain as healthy and active a lifestyle as I can.”
Find the good in your situation: Maintaining optimism can often be the hardest part of living with a chronic illness. “It’s a constant journey of trying to build yourself back up to where you remember when everything still made sense and fit in the right way,” she says. She recommends staying positive and thinking about positive impacts on your life. For example, Marjorie says that living as a physician with SCD has sensitized her to her patients’ needs. “I think about the things that a patient might go through in a completely different way, so I really believe that my illness has made me a better physician,” she adds.