So, in my last blog post, I told you about the importance of attending the SCDAA conference if you are living with sickle cell disease. Well, the following story, in all its controversy, occurred at this year’s event – and is an excellent example of why attending is important. Welcome to a beautiful sickle cell debate and a tale of clashing points of view.
A Voice From the Crowd/ A Spark from the Wilderness
So I am sitting in the audience as the popular Lonzie Lee Jones Patient Advocacy Symposium is wrapping up with its usual question and answer period. The woman sitting next to me stands, approaches the Q&A mic, and states the importance of informing the uninformed when they have the sickle cell trait, what that means, and its impact on procreation. She then goes a step further adding this can help them avoid dating others gene carriers, so they can avoid having a child with sickle cell.
Education, Education, Education…
Now, more sickle disease education, and informing people about their medical status is something everyone at the conference supported. However, her statement was not well received, and she could not understand why? Some in the crowd grumbled while others sat silent, and the typical polite applause – did not come. To her it was common sense to pass on sickle gene relationships and avoiding procreation was a foregone conclusion. She failed to understand that medical professionals and advocates draw the line at education, and decisions regarding relationships and children are personal choices, and weighing in was ethically out of bounds.
The Doctor Makes a House Call
So in response, Dr. Wanda Whitten-Shurney ( a fierce sickle disease advocate and one of the most important sickle disease doctors in the country) picked up the mic and kindly pointed out that 1) that sounds dangerously close to stating that the sickle cell warriors at the conference should never have been born and 2) sickle gene carriers may fall in love and choose to have children, ultimately it is their choice and not something medical professionals should comment on. Disagreeing, the woman shook her head and pushed back against the idea that she was making judgments about anyone living with sickle cell, after all, she had the disease. She just felt informed trait carriers would lead to fewer sickle births; thinking no one in their right mind would intentionally have a child with sickle cell disease. Right?
Conflict, Frustration, and Disease Education
As I saw her frustration grow that her plea fell on deaf ears, I tried to explain why. And when I talked about my personal life the conversation – became a controversy. By now the symposium was over, and a small crowd had formed around us as we continued to talk. I informed the young woman that although my wife did not have the trait, had she been a carrier, we would still have had children despite the risk and a 50% chance of a sickle disease birth. I let her know although I hated my disease – and the pain it causes me, I am so much more than sickle cell, my life has the same value as a healthy person; and if I had a sickle cell disease child, they too would be more than their disease. A full wonderful life was theirs for the taking, just like anyone else. She and many others standing there with sickle cell pushed back against my stance, telling me I was wrong to feel this way, that to watch a child in pain is horrendous. One gentleman even stated there was a difference between selflessness and selfishness and my having a child was a selfish choice. Who on earth could not understand their concern about physical suffering? Watching your child grow up with a painful chronic illness has to be difficult. I appreciated the resistance but felt chalking it up to me being selfish was shortsighted and lacked nuance in his analysis.
A Nuanced Point of View
I clapped back, “I am not a walking, talking, sickle cell crisis, I am more than my pain or disease.” Growing frustrated, I felt these folks were missing so much. 1) Every person with the disease is affected differently. The type of inherited sickle cell influences disease severity (SS, SC, Sickle Beta Thal, etc.), crisis frequency, life choices, the quality of healthcare, etc. What their life would become is an unknown variable, no one truly knows and could never say before birth. I know of warriors who go years without a sickle cell crisis and others who are sick monthly. Heck, look at T-Boz, I know many sickle folks could never manage a two hour stage performance night after night. Each sickle story is unique; we must always remember that. 2) With the current sickle disease advancements in treatment and knowledge, the experience of children born with sickle cell in 2018, will be unrecognizable to us warrior adults at the conference debating the merits of childbirth. Our childhoods’ were harsher than what a present-day sickle newborn will experience. Their long-term care will be better than what was available when we were born. 3) Most importantly, it is highly likely that a sickle disease cure will happen in the lifetime of current sickle newborns. The current cure, bone marrow/stem cell transplants, are getting safer with time, with advancements occurring seemingly yearly. Genetic editing with CRISPR gene therapy may permanently change healthcare as we know it for all genetic diseases and completely end sickle cell disease. And there currently are more clinical trials for sickle cell anemia then ever before, not to mention the overall advancements in medicine that are occurring.
Now my reasons for feeling how I do are thought out and well reasoned, while the opposing point of view against having SCA children reeks of fear and hyper-focus on all of the disease’s negative aspects.
Make Your Own Life Choices
However, none of my beliefs matter in the long run to anyone else, including you, because they are MY BELIEFS! To have, or not to have a child with sickle cell disease is a personal decision and there isn’t a WRONG answer. We all have to make the best individual choices.
Healthy Sickle Cell Debate and Healing Dialogue
Now one may think that the small crowd telling me my decisions were wrong and selfish upset me. And while that’s accurate – I was defensive to the point of shaking with “fight or flight” energy, I think it was great that it happened. It was wonderful that even after the symposium, Dr. Whitten-Shurney continued to discuss the matter in fellowship with the young woman. And for SCA warriors, it was/is vital for us to discuss, debate, agree, and disagree about issues. Although this type of interaction is rare, this year the conference provided the chance to talk to fellow warriors, and share relatable experiences. That we disagreed with each other is fine, but so what, that is what any family being honest with each other will do – laugh, fight, argue, agree, and, disagree.
To The Future…
I look forward to having meaningful conversations at the next conference – as there is so much to discuss, and the conference offers face to face connection with warriors from across the nation.