We recently connected with Monica Rockwell and have shared our conversation below.

Monica, looking forward to hearing all of your stories today. Was there a defining moment in your professional career? A moment that changed the trajectory of your career?

In 2013, I was training for a marathon but prior to my training I was not diagnosed with Sickle Cell Beta Thalassaemia and Congestive Heart Failure. One day after training I was experiencing excruciating pain and over the counter pain medication was not easing the pain. My mother took me to the emergency room and doctor injected me with pain medication then informed my mother I will feel better soon because she is just experience muscle fatigue. A few days later I was hospitalized for over a month. I was in the critical care unit two weeks unresponsive and then I finally opened my eyes for my loved ones. I remained there for four weeks then was transferred to the seventh floor for continuous care. After being dismissed from the hospital, I learned there were few to no resources for Adults living with Sickle Cell Disease in my hometown. I was referred to a Specialist in August, Georgia which is 4 hours away from my hometown. The Specialist provided outreach services to the area once a month. I had no knowledge of Sickle Cell Disease nor Congestive Heart Failure so I spent two years researching. As a Sickle Cell patients, I saw the need to advocate for myself along with others in my community and surrounding areas. I created SWGA Sickle Cell Awareness, Inc to show patients how to advocate for themselves and give them access to medical resources through medical professionals, pharmaceutical companies, governmental agencies and educational institutions.

Monica, before we move on to more of these sorts of questions, can you take some time to bring our readers up to speed on you and what you do?

I was diagnosed with Sickle Cell Beta Thalassaemia and Congestive Heart Failure at 38 years old which is rare. Most patients are diagnosed during pediatric years, As an adult patients, I have learned how to find resources for patients living with this chronic illness. SWGA Sickle Cell Awareness, Inc with Patient Advocate Monica hosts annual Sickle Cell Awareness Meetings entitled “Come HUB With US” (the medical team that every Sickle Cell Patient needs) and “Let’s Game Plan for Sickle Cell” (focusing on the complications of Sickle Cell and the treatment options available). We participate in community health fairs and events, medical conferences/conventions as vendors. We provide one-on-one training with patients on self advocacy and family/friends to help them advocate. Patient Advocate Monica is a trained professional speaker. She is a content creator on social media such as LinkedIn, YouTube, Facebook, Instagram, and Twitter as SWGA SickleCellAwareness..

What do you think helped you build your reputation within your market?

I started by creating SWGA SickleCellAwareness platform on social media and people began to connect with me. I began documenting my Sickle Cell Beta Thalassaemia research and my personal experiences which captured my audience attention. People began inviting me to join their groups for me to input my knowledge. Nonprofits began to see the work I was doing so they sponsored me to attend symposiums, conferences and conventions to get training on Advocacy. I network at every event and every opportunity that was given to me. I also connected with other social media content creators. I found my tribe!

Let’s talk about resilience next – do you have a story you can share with us?

Sickle Cell Disease is an inherited blood disorder and doctors tell patients they will not live past the age of 21. I was diagnosed at 38 years old with this chronic illness which is unheard of and unexpected. Everyday I get up I am thankful and I keep going. I have moment when I’m too sick to get out of bed or in too much pain to do anything, but I know those moments will pass and I keep going for my love ones.

Contact Info:

• Instagram: @SWGA.SickleCellAwaress
• Facebook: @SWGA.SickleCellAwareness
• Linkedin: @Monica Rockwell
• Twitter: @SWGASCAwareness
• Youtube: @SWGA SickleCellAwareness