Since 1983, the United States government has recognized September as Sickle Cell Awareness Month. In the thirty-four years since, a great deal of progress has been made with regards to research and treatment. In fact, activity in these two combined areas has led to a doubling of the average life expectancy for Sickle Cell patients in the United States. That is obviously great news that we can all appreciate and salute. We are making great strides at an accelerated rate and with the advent of the new CRISPR technology (https://www.yourgenome.org/facts/what-is-crispr-cas9), we stand on the verge of having a cure that, one day, can be accessible to more patients than stem cell transplants. But that day is still in the future.
The Sickle Cell community applauds these advances, but we need to remain focused on those individuals that face day after day of unrelenting pain, missed life opportunities and burdensome financial challenges. We must remain fixated on the needs of patients and families who face lives of uncertainty and recurrent flirtations with despair. And we should remain determined to do everything in our power to mitigate and/or minimize the many compounding issues that affect the members of our Sickle Cell community. We are not alone in this and we remain grateful that, now more than ever before, Sickle Cell advocacy and activism is at an all-time high.
This brings us to an important point. For thirty-four years we have heard the words “Sickle Cell Awareness.” Awareness is only one part of the solution. Even so, it continues to amaze us that we still have so much awareness work to do. Too many people still don’t know much about Sickle Cell. A nursing student recently said, “I wish they would have spent more time on Sickle Cell. One class. That’s all we had.” This young woman was aware of Sickle Cell but she really didn’t know how to care for people who have it. This is just one example of why we need more than awareness to make a meaningful impact on this illness.
We need to combine increased awareness with increased action. Whether it is institutionalizing a way that ensures that healthcare providers undergo more intensive training on Sickle Cell care or creating increased opportunities for Sickle Cell patients to access higher levels of education and employment, we need to take action that can make a difference. Awareness can’t do that by itself. It takes action to make things change.
Gary Gibson; President/CEO
Martin Center Sickle Cell Initiative
How important is community connection? Are there benefits to feeling like you're part of a group? The Indiana Sickle Cell Consortium (ISCC) believes that a sense of community is important for everyone’s wellbeing, especially those with a chronic condition. Connecting with other people who can relate to the ups and downs of living with a chronic condition help ensure you don’t feel like you’re alone. That's why consortium members work to connect those affected by sickle cell to others with similar experiences.
Our most recent community outreach project involved ISCC booth representation at the INShape Indiana Black and Minority Health Fair from July 13th to 16th. At this event we had the opportunity to talk to over 1,000 people about sickle cell disease and the importance of getting tested for sickle cell trait. Several people with sickle cell disease volunteered to staff our booth, and this was a chance for them to talk about their experiences with health fair attendees.
What’s the next event in the pipeline? The 9th Annual Sickle Cell-abration on September 30, 2017! (Check out event details here: https://2017sicklecellabration.eventbrite.com). This event, which includes education about sickle cell disease, will also feature a fashion show. Fashion show models will all be people with sickle cell disease. The fashion show will be a chance for patients to share their experiences and meet other people who are living with or affected by sickle cell disease.
Feeling part of a larger community is important for those who are living with a chronic illness. The ISCC is striving to help people living with sickle cell create that community for themselves. If you're interested in volunteering or participating in any of our events contact the consortium at ISCC@ihtc.org.
Ellen Bloom, MPH, CHES; Sickle SAFE Program Coordinator
The Indiana Hemophilia & Thrombosis Center
Written By: Dr. Emily Meier, Pediatric Hematologist and Sarah Hall, MHS, PA-C of Indiana Hemophilia and Thrombosis Center, Inc.