INCEPT: Living with Sickle Cell

Third in a series of guest bloggers, today we have Tim Johnson, an active CME within Incept who is living with Sickle Cell Anemia. Join me as we take a glimpse into his life as a survivor working for the greater good of recruiting blood donors.


When it comes to donating blood, there is definitely an odd feeling for me on both sides of the equation.

On one side, I don't donate blood. So, initially, you would likely think about how I'm missing the opportunity to save up to three lives with each donation. You would be able to include the fact that out of the 36% eligible to donate, only 10% of the population actually does (with 4.5 million patients needing a blood transfusion every year). Why do I choose to not take time out of my day to save up to three lives - one of which may be a friend or family member? For me, it is, unfortunately, an easy answer: I was born deferred.

It's easy to sidestep feelings of guilt about not donating blood when you're ineligible. Then again, if I was eligible, I would be able to make a real impact in my community. In someone's family. In somebody's life. Naturally, when I became a blood donor recruiter at Incept, it was truly a wonderful experience and testimony to the donors we get to have conversations with on the phones.

I am blessed to have SC Disease (Sickle-Hemoglobin C Disease), as opposed to full-blown Sickle Cell Anemia. So while I still have Sickle Cell crises - a lowered immune system, quick onset dehydration, and increased susceptibility to any illness that requires healthy red blood cells to recover - I avoid having to go through blood and bone marrow transfusions that could keep me in the hospital for many months at a time (as many Sickle Cell patients do).

The medical society didn't start to begin checking for Sickle Cell in patients until 1996, so both my parents were unaware of my hereditary illness until 1989 when I had a seizure at 2 years old. I did have a nice run - a couple sickle cell crises in school from dehydration - and even made my way into the local paper when, as a 14-year-old boy in Jackson High school, I was diagnosed with meningococcal meningitis. That led to my friends having to take a preventative pill, my girlfriend
having to receive a shot, and any visitors and hospital staff who came into my room to wear those cool, yellow contamination outfits. When my friends all started smoking cigarettes and got to be "cool," all I got was a lung biopsy - even though it did help me promptly quit.

I realized, as I got older, that I became less and less affected by my immune system and gained a better understanding of the disease (especially with September being Sickle Cell Awareness Month). Since there is currently no universal cure for SC Disease and since I was born with this illness, it really shaped my life and understanding of the different ways blood can affect the life of another.

When Rebecca Crosen spoke to me about sharing my experience with SC Disease, I jumped at the opportunity. I sought to communicate not only my side of the story, but also the importance of donating blood (for those who are healthy enough to donate). With Rebecca being a recipient and me, a donor born deferred, we both have amazing stories to tell. So until the next time, I will continue to support others afflicted with Sickle Cell Diseases and stress the importance of saving lives!

I still help to save lives each and every day as a blood donor recruiter, how do you save lives?

Tim Johnson
Incept