Life & Work with Dr. Lametra Scott

Today, we’d like to introduce you to Dr. Lametra Scott.

Alright, so thank you so much for sharing your story and insight with our readers. To kick things off, can you tell us a bit about how you got started?
Breaking The SSickle Cell Cycle was started in August 2015 out of a need for increased community awareness about sickle cell disease and the importance of sickle cell trait testing, especially in minority communities. I discovered the need for community sickle cell education from my own personal experience in learning, after I was pregnant, that I was one of the 1 in 13 African-Americans who carry sickle cell trait.

The time to learn of one’s sickle cell trait status is ideally not during pregnancy, but typically this is something that should be known BEFORE the family planning process takes place. Unfortunately, there’s not much attention devoted to sickle cell trait testing beyond the newborn screening period and children continue to be born to parents who are not aware of their trait status nor have they been properly educated about the impact sickle cell trait status can have on future children.

In addition to the discovery of my sickle cell status during pregnancy, after my son was born I also learned that many health care professionals are not knowledgeable about sickle cell disease. The results from the confirmation newborn screening for sickle cell disease, which was conducted a few weeks after my son’s birth, were reported to me incorrectly.

I was initially informed that my son only had sickle cell trait, only to be informed a few weeks later that he actually has sickle cell disease and I needed to get him connected to a hematologist as soon as possible to begin prophylactic medications which would protect him from contracting infections that could be deadly.

These series of events catapulted me into action to do something about the fate that my family had been given. Despite the grave outlook on life that is typically associated with people who have sickle cell disease (frequent hospitalizations, pain, depression, shortened life span, etc.)

I wanted to show my son that he didn’t have to be ashamed of sickle cell, he can achieve anything he wanted in life- even with sickle cell, and he can be a strong advocate for himself. As I sought community resources for sickle cell advocacy, I couldn’t find anything devoted to increasing sickle cell trait advocacy and encouraging sickle cell trait testing, so I created it in Breaking The SSickle Cell Cycle Foundation, Inc.

Over the past nine years, what started as an idea of mine to increase community sickle cell trait testing has blossomed into nationwide sickle cell advocacy opportunities. I’ve been able to work with local colleges and universities like TSU, Lipscomb, and Columbia State to teach students about sickle cell disease and offer trait testing opportunities via a partnership we have with the Meharry Sickle Cell Center.

I’ve been able to enter into partnerships with companies like 23andMe which provides our organization with genetic testing kits as a part of their Sickle Cell Carrier Awareness Program which tests for sickle cell trait and also provides an individual with personal information on common health conditions that impact minority communities and informs the person if they have any genes that would predispose them to such conditions.

I’ve been featured in national media publications like the New York Times, worked with industry partners to create sickle cell educational materials, and have received local recognition from our former Mayor Jim Cooper. One of the things I am most proud of is creating the Sickle Cell Warrior Walk-Run 5K. This event was created because members of the sickle cell community did not feel represented or that the city cared about them we have a number of races dedicated to other health conditions with great participation, but there’s nothing done on a city-wide level for sickle cell disease.

Although I had zero experience in planning a 5K, I understood the need of the community because I’m a part of that community and I wanted the families to know that we see them and their condition is equally important as any other condition that garners national attention. We are now in year 4 of the Sickle Cell Warrior Walk Run 5K and looking forward to continued growth and community partner support to help us break the cycle of sickle cell disease.

Alright, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
The road to establishing a non-profit agency has not been a smooth one. The biggest challenge lies in the fact that many people don’t know or understand exactly what sickle cell disease is or how it affects the body, coupled with the fact that there are many misconceptions, i.e. “people with sickle cell are drug seekers”, about sickle cell disease.

PR resources are also limited, so it’s hard to get the word out about the great work that we are doing, we have to rely on word of mouth which does work, but it’s like fishing with a net versus fishing with a rod and reel. Funds in general are limited, as with many non-profits, so we are limited in the impact we could have in the community. We look to partner with other business organizations and volunteers who understand our mission and would like to work with us and become an ally to the sickle cell community.

Thanks for sharing that. So, maybe next you can tell us a bit more about your work?
I am a pharmacist who started a sickle cell non-profit organization to help increase community sickle cell awareness and provide sickle cell trait testing to young adults of child-bearing age who are not knowledgeable of their sickle cell trait status.

I specialize in public speaking and working with people and organizations to help them understand the importance of understanding sickle cell disease, treatment options, and the impacts SCD has on our community. I am most proud of the positive example I am setting for my son who has sickle cell to be an advocate for himself.

I am also proud of the ability I have to encourage others to learn their sickle cell trait status and participate in sickle cell trait testing after sharing my story with them. The thing that sets me apart from others is my willingness to meet potential clients and patients where they are on the journey to understanding how SCD can impact their lives/organizations either directly or indirectly.

We’re always looking for the lessons that can be learned in any situation, including tragic ones like the Covid-19 crisis. Are there any lessons you’ve learned that you can share?
Covid-19 taught some very important lessons to all businesses and for me, it was an opportunity to learn how we could best serve our community without being able to physically meet with them.

Pricing:

• $30 1 mile registration
• $40 5K registration

Contact Info:

• Website: www.btsscycle.org
• Instagram: https://www.instagram.com/brkthesscycle/
• Facebook: https://www.facebook.com/brkthesscycle