My Hopes for the Future of Sickle Cell
As August draws to a close, so does the end of summer. September brings a new season and a fresh start. It is also Sickle Cell Awareness Month — a time to get involved and spread knowledge about sickle cell disease. But as someone with the condition, I’m exposed to many of the awareness campaigns that go on throughout the year. Awareness for me isn’t limited to a single month, it happens every day.
As I look forward to the different sickle cell campaigns planned for September, I’m also thinking about why an awareness month is necessary. This has led me to reflect on my thoughts from last year’s Sickle Cell Awareness Day on June 19. I had written a memo encouraging myself to do more, until everyone knows what sickle cell is.
As I’ve stepped into an advocacy role and embraced sickle cell as part of my identity, I’ve been reminded to keep pushing forward. And there’s no better time than Sickle Cell Awareness Month to share with you all my hopes and goals for the future of sickle cell.
Goals for our community and society
As sickle cell patients, I realized that we are still waiting for information about our condition to be readily available within the community. I’ve been wondering how to practically increase awareness.
Sickle cell should be taught in schools as much as other inherited genetic conditions. Our educators should have a role in teaching current and future generations about sickle cell and how to support those who have it. A lack of knowledge often leads to a lack of understanding.
As sickle cell patients, we are still waiting for the day when:
- Sickle cell is taught and discussed in schools.
- Those with sickle cell can speak about it openly without fear or shame.
- Employers and co-workers do not discriminate due to lack of understanding.
Goals for our well-being and health
Based on personal experiences, awareness is lacking in every facet of society, including healthcare. At times, the system built to support patients doesn’t know enough about sickle cell. In speaking to others with the condition, I have yet to meet anyone without a hospital horror story. There are countless instances of patients receiving incorrect treatment in the hospital, or having to fight for their lives by advocating for the treatment plan that will best serve them.
As sickle cell patients, I hope that one day:
- We can go to any hospital, and the staff will know how to treat us.
- We can ask for stronger pain medication without judgment.
- We don’t fear for our lives in the place that’s meant to save them.
Awareness is necessary to create a movement that produces actionable change. By continuing to spread awareness and share my thoughts in a few areas that can be improved for sickle cell patients, my hope is that one day, sickle cell will no longer be considered an invisible disorder; that widespread coverage will encourage more investment in sickle cell research, aiming for new treatments, new preventive measures, and possibly even a cure; that young children with sickle cell won’t feel like a burden on their family or community; and that sickle cell patients won’t be faced with constant feelings of isolation. I want all sickle cell patients to feel supported in all aspects of life.
With Sickle Cell Awareness Month approaching, how do you think we can spread more awareness? What campaigns are you aware of or participating in? Let me know in the comments below.
***
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
About the Author
Comments
Michael Robinson
All that sounds nice for us Sicklers, especially the hospital and pain meds thing, but considering the fact that there are other "factors" that have an impact its not likely to happen. Things outside of our control, like how the individual nurse or er docs "upbringing" factor into their interactions with patients. And that isn't right but it happens and affects care sometimes. I've had my fair share of it growing up in Texas and even now in Michigan. And now that the public believes there is an "opioid crisis" pain meds are now being taken away from patients who need them the most. Sicklers especially have it bad because most docs in the past would just throw pain meds at us instead of trying to find alternative treatments to manage our pain. I've been told numerous times by all kinds of docs, not just my own, that Sicklers are the only group that should get whatever pain meds that they ask for. Yet when I goto the ER, I'm drug seeking. And now with all these supposed "new" DEA and CDC medication mandates, Sicklers are in more trouble than we've ever been in. But I still try to fight, even if its just in my neighborhood, for Sickler equality and a better understanding. I talk with nurses and er staff even when outside of the hospital. If I had the means and platforms I'd go around the country talking about Sickle Cell. I have been A Sickle Cell Warrior for 41 years and will continue to be until my last breath. I lost my sister to this cursed disease and that just made me double my efforts. So maybe just maybe other Sicklers in my area will get a little better care because of her and myself.
Natasha
I am Natasha from Zambia
Just read your article it's so true and inspiring,I have shared it on my Facebook page
The care we receive in zambia has to be improved
Dunstan Nicol-Wilson
Hi Natasha. Thank you for sharing this, I really appreciate it! I hope the care improves in Zambia too.
Dunstan Nicol-Wilson
Hi Michael. Thank you so much for sharing your experience, I 100% agree with you that there are things outside our control that also impact how we are treated. All healthcare professionals should have a level of understanding of how to treat us. Hopefully, by sharing our experiences and raising awareness in all areas we can have an impact. Sorry to hear about your sister, it's a motivation for us all to keep going and trying to change the narrative!