Social Media Stars Making a Social Impact: Why & How Si’Neka Demery Of Akenis Is Helping To Change Our World
An Interview With Stanley Bronstein
Let go of situations that no longer serve your purpose
One person’s No, Not interested; another person’s, “Yes, Let’s Do it!”
You have to be your biggest cheerleader
No matter what, have fun along your journey.
It’s okay to rest, burn out’s DO NOT have to be apart of your process to succeed.
As a part of our series about leaders who are using their social media platform to make a significant social impact, we had the pleasure of interviewing Si’Neka Demery.
Si’Neka is not your average influencer, she is a force to be reckoned with. Loud, Proud, and unapologetically authentic, Si’Neka is turning heads and breaking barriers as she shares her journey living with Sickle Cell Anemia Disease. Not letting the disease define her, she is redefining what strength, resilience, and representation looks like in today’s digital age. With a growing following and an unshakable sense of purpose, Si’Neka is building a league of her own, one post at a time.
Thank you so much for joining us in this interview series! Can you tell us a story about what brought you to this specific career path?
I don’t necessarily have a story per say but I do know that until T-Boz from TLC made her battle with Sickle Cell Anemia known; I had never heard of any celebrity, influencer, or anyone with a platform speak about the disease that impacts millions, especially in the African-American community. I chose to advocate for Sickle Cell Warriors because we are far too often overlooked, mis-understood, and mis-diagnosed by people who we trust to protect, empower and support us. I never wanted to be an “influencer” but if it helps me spread the word about Sickle Cell Anemia then I will definitely continue to do so. I want to shine a huge spotlight on Sickle Cell Anemia.
Can you share the most interesting story that happened to you since you began this career?
I’ve got to work with other influencers, brands, and even celebrities. This blows my mind to this day. People that I used to watch on television or hear on the radio; I am now engaging in supportive conversations to my cause and what I am trying to do. To have someone you used to cheer on; now cheer you on, is a very interesting and cool experience.
It has been said that our mistakes can be our greatest teachers. Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
I have definitely made plenty of mistakes on this journey especially in the first 2 years. One thing I wish I would have known before was not to be a perfectionist with every aspect of it. The imperfections are what make me unique and I don’t need to conform to fit in. I would change things so much that I was starting to lose sight of the true vision that I had been manifesting and planning for years for. I missed out on some big opportunities because I wasn’t fully embracing my originality; I used to be my biggest critic but definitely not anymore.
You have been blessed with success in a career path that can be challenging. Do you have any words of advice for others who may want to embark on this career path, but seem daunted by the prospect of failure?
Thank You, The advice I would give for anyone who may want to embark on this career path but may fear failure is that you have to be able to authentically accept failure as much as you would accept success. You cannot have one without experiencing the other and anyone who has acquired true success will tell you they also know great failure. I also encourage you to embrace your own individuality and make sure your work is one that you created and not a replica of someone else’s. It is easy to see someone succeeding and think that if you simply copy whatever they do then you will also experience the same amount of success and that is very untrue and will only lead you to a dead end. It’s not about being in competition but wanting to add value to the world, together.
Ok super. Let’s now jump to the core focus of our interview. Can you describe to our readers how you are using your platform to make a significant social impact?
I am an African American woman who lives every day with a disease (Sickle Cell Anemia) that affects every aspect of my life, daily. I also have a daughter who battles the same disease. I grew up during a time where Sickle Cell was nothing more than a whisper amongst medical professionals. Although they were now including genetic testing for the disease during newborn screenings, Doctors and their staff still did not have the proper education and/or tools to help individuals like myself and their families. My parents weren’t offered any further education once my diagnosis was confirmed at birth and they also didn’t independently pursue any further information about the disease and my medical care lacked a great deal; which I know led to a great deal of trials and obstacles that I faced at a young age alone. No one knew how to take care of me or what to do to be supportive of me. You can imagine being 10 years old and trying to explain the excruciating pain in your legs, back, and chest during the brutal Michigan winter months, was difficult. Now as an adult, raising a daughter going through the same issues, I made it my mission to ensure she experienced life differently than I did. I want her and other young ladies (even older ones) to know that having Sickle Cell doesn’t make you different, weird, or hard to love; there are people in this world, like myself, who want to be the support system that they desperately needed in their hardest times.
This is why my platform is so important and I will continue to advocate for Sickle Cell Disease and every person it impacts. The world needs to see and know that this disease affects millions especially in the African American community within the US and we need more people with larger platforms to help spread awareness and advocate for us.
Can you tell us a story about a particular individual who was impacted by this cause?
My daughters Cylah & Kaleah. Cylah was diagnosed with Sickle Cell Anemia at birth and Kaleah was diagnosed with Sickle Cell Trait at birth. Cylah, having the disease, had experienced some hard medical crisis in her first 10 years of life. I almost lost her to a severe Sickle Cell crisis when she was only 4 years old, when she had caught “Walking Pneumonia” from a classmate in her preschool class. This would trigger the worst crisis she would experience that landed us both in ICU for 10 days. I have never felt more defeated than when I watched her cough up blood, and lose so much weight that I could see her rib cage, clear as day. I refused to leave the room for any reason. When the nurses were worried that I was becoming depressed and wanted me to go outside for 5 minutes to get air, while they stayed with Cylah; I would shake my head, “No”.
I’ll never forget the prayer that I said to God, laying on the ICU bathroom floor, screaming into a towel with the shower on.
“God, please save my baby girl. If I lose her, I will lose myself and never be whole again. Please give me the strength to continue to be strong even though my world is crashing. My heart hurts God and I know I’ve made mistakes in life but please don’t hurt me by taking her. I want her to live, go to prom, go to college, see the world, get married, have children, and just LIVE!”
Was there a tipping point that made you decide to focus on this particular area? Can you share a story about that?
During Cylah’s ICU stay I had a hard time with the amount of narcotics the hospital was willing to administer to a 4 year old little girl who was small framed.
She was being administered Morphein by the way of a pump and it was actually causing her more problems. She lost her appetite because of it, this is why she had lost so much weight. When I was voicing that I wanted the Morphein pump taken away and we needed to find a less potent form of pain management, the doctor almost laughed at me as if I didn’t know what I was talking about. Yes, he may have the formal PHD, but I also had a medical background, so I was educated and also I know personally how narcotics will affect the body as someone with the disease myself.
I signed a form stating I was making the call to remove the Morphein pump against the Doctors advice and guess what? Within 24 hours, Cylah started getting an appetite again.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
- Support Akenis and other Sickle Cell Advocate Agencies. Whether you donate, collaborate, or simply share our work; it helps us reach more Sickle Cell Warriors and their families.
- Medical professionals need to be more educated on Holistic practices for Sickle Cell Warriors who DO NOT want to solely rely on pharmaceutical remedies. Sickle Cell patients are susceptible to become dependent on narcotics for pain management and pharmaceuticals to live a normal life.
- Communities can host special events to help bring awareness for Sickle Cell Anemia, I think leaders would be shocked to learn how many people live with this disease in their communities.
Why do you think social media in particular has the power to create social change and create a positive impact on humanity?
Social Media = Easy Access. There is no other way to explain it, we are all connected through Social Media and the power behind that connection can change the masses. Look at past movements gaining incredible momentum because of social media coverage and reposts by Celebrities and Influencers. Social Media is more than just a platform to see selfies, funny quotes, and debate about the latest episode of Love Island; it’s a movement for people like myself to be able to share their truth and connect with others who feel the same, so collectively we can improve the conditions set before us for the future generations to come.
What are your “5 things I wish someone told me when I first started” and why?
- Let go of situations that no longer serve your purpose
- One person’s No, Not interested; another person’s, “Yes, Let’s Do it!”
- You have to be your biggest cheerleader
- No matter what, have fun along your journey.
- It’s okay to rest, burn out’s DO NOT have to be apart of your process to succeed.
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
I am inspiring a movement, The Sickle Cell Warrior Movement and I cannot wait to see what else God has in store for us.
Is there a person in the world, or in the US whom you would love to have a power lunch with, and why? He or she might just see this, especially if we tag them. 🙂
T-Boz from TLC. Like I had mentioned before she was one of the first celebrities that publicly came out with Sickle Cell Anemia in the 90’s and I was 10 years old when she shared her story. It made me so happy to know that I wasn’t weird and there were others like me, even celebrities that I looked up to.
Andrew Onwubolu aka Rapman, who created the Netflix hit “SuperCell” which highlights individuals who have Sickle Cell Anemia acquiring super powers. I screamed with so much pride watching people on the internet and social media talk more about Sickle Cell and how much it’s highlighted in this show! Sickle Cell Warriors all over the world were saluted through that series and I appreciated it SO much.
How can our readers further follow your work online?
We are always looking for people who want to support the cause and collaborate so please email me at NaturallyAkenis@gmail.com and let’s continue to make changes together.
Anyone can check out our official Akenis website www.Akenisllc.com we are always uploading Holistic Wellness content, Tips & Tricks for Sickle Cell Warriors and/or anyone battling a chronic illness who wants to seek a healthier life through natural products and remedies.
Last but not least make sure you guys follow us on Instagram “Akenis_llc” and like, share, comment!
This was very meaningful. Thank you so much!
About the Interviewer: Stanley Bronstein is an attorney, CPA, and author of more than 20 books. However, he doesn’t consider any of those his greatest achievement. His most significant accomplishment was permanently losing 225 pounds and developing the personal growth system that made it possible — The Way of Excellence. As a catalyst for change, he has dedicated his life to helping others maximize their potential, transform their lives, and achieve optimal health. To learn more, you can download a free PDF copy of his latest book, The Way of Excellence Journal, at https:// TheWayOfExcellence.com.
Social Media Stars Making a Social Impact: Why & How Si’Neka Demery Of Akenis Is Helping To Change… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.