Parent, Sickle Cell Disease

Sickle Cell: Stop Waiting for A Celebrity Savior

Madam Noire recently published an article about Sickle Cell Anemia in response to an article published on Mother Jones‘ website. The article stood out to me because it added a buzz in people’s ears about the disease. As a mother parenting a child with Sickle Cell Disease (SCD) I want everyone to know and understand what this disease is and how it continues to spread in our community. The fact that Sickle Cell Disease is a genetic disorder makes this disease different. Awareness is the key to making this disease disappear from our community.  No, SCD is not contagious, but it continues to multiply throughout our communities because people who carry the sickle cell trait are usually unaware of their status, and then pass this genetic disorder onto our offspring.

I wanted to share this post in response to the comments. Yes, an article isn’t complete until you take a few minutes to check out the pulse of the community by reading the comments from others. As I expound on the article for a few minutes because my comment was too long for me to post within the comment section I am sharing my response to the commenters here.

An overwhelmingly large number of comments were about Sickle Cell needing a celebrity to get behind it and promote awareness, advocate for better funding, and make a difference. I do not agree that a celebrity would make a big difference; rather I believe that the largest difference will come when there are people in our community who will stand up and say enough is enough, who are fully committed to this cause no matter what happens, and who will put their money where there heart is. Unfortunately, for some people it will take a tragedy from the death of a love one to help them get involved, but another death from Sickle Cell complications should not have to occur for all of us to care here’s why:

Celebrity Sickle Cell Advocates Already Exist:

1. Jourdan Dunn

Super model Jourdan Dunn is one of the most outspoken celebrities because her son is battling the Disease. In Vogue magazine she shared how the disease affects her son and how she has partnered with the Sickle Cell Disease Association of America to help raise awareness. I love how Jourdan Dunn can still pursue her dreams even though Riley has Sickle Cell Anemia, thankfully, Jourdan is well blessed with a Mum who steps in and supports her with Riley. The truth is, many of us parents with children who are sicklers, are on our own while our dreams are on hold.

2. Prodigy from Mob Deep

Prodigy was born with Sickle Cell Disease and lives with the disease everyday. He has been outspoken about the disease for many years.

3. T-Boz

Tionne “T-Boz” Watkins was the first celebrity I knew who had Sickle Cell Disease. She is an outspoken advocate, and is fighting everyday of her life to stay healthy and strong.

4. Lorenz Tate

Started an entire foundation with his brothers in Chicago to help raise Sickle Cell Awareness, The Tate Bros. Foundation NFP. The Tate brothers do not have Sickle Cell, like some internet sites have reported; rather, they started the foundation because several of their mother’s friends lived/died from complications related to Sickle Cell Disease. Although, I was unable to confirm recent activity from the foundation, I applaud Lorenz and his brothers for trying to help children living with Sickle Cell Disease.

5. KiKi Shepard advocates for Sickle Cell with her friend’s: Dawn Lewis, Vanessa Bell Calloway, Obba Babatunde

The K.I.S. Foundation, Inc., was founded by KiKi Shepard and is committed to improving the health and quality of life for children, adults, and families living with Sickle Cell Disease because sickness has no boundaries and compassion has no limits. This foundation brings many celebrities such as Tatyana AliKristoff St. John, Salli Richardson, Michael Jai White, Jennifer Lewis, and MC Lyte together to help those who are living with Sickle Cell. Celebrities are advocating, but if you want to see more done for our community regarding Sickle Cell, it starts with us and our own money, let’s support these causes and make a difference in the lives of those suffering from Sickle Cell Anemia.

Let us continue to support this celebrities and their foundations that help with Sickle Cell research funding. My goal is clear, don’t wait until someone you love is hurting or dying due to sickle cell complications, make a difference today! The worse part about Sickle Cell that its uncertainty and unpredictability causes many people to live in fear. The pain from a sickler doesn’t just hurt them, it hurts their entire family, causing sleepless nights and unrest.

What Do We Need to Do, If A Celebrity Isn’t the Answer:

1. SPEAK UP!

We: mothers, fathers, sisters, brothers, aunts, uncles, etc are the voices of our communities. We are the ones who make a difference on the grassroots level, no celebrities stepping onto our streets will cause a change to take place. No, that responsibility is our own.

  • Know what the disease is.
  • Know how it affects the body
  • Know your risk factors.

2. GET TESTED.

My husband and I had no idea that we were sickle cell trait carriers. We didn’t have the slightest clue, neither one of our parents sat us down and told us that we could potentially pass this genetic disorder onto our children. Parents, it starts with you! I don’t think our parents knew that we were carriers of the sickle cell trait while we were young, but now in this millennium parents have no excuse, because at birth every child is screened for the disease and the trait. TELL YOUR CHILDREN! After you have confirmed that your child has the trait or the disease educate them. Sit him or her down and explain what this means for their own personal health.

3. EDUCATE YOURSELF, THEN OTHERS.

Stop silence regarding this health travesty. If you have ever seen a person experiencing a crisis, it is horrific and for a parenting watching their child in pain, it is heart breaking. While Sickle Cell trait carriers don’t have the disease, the trait can still have complications such as participating athletically at high altitudes or becoming dehydrated. 

4. GIVE TO SICKLE CELL CHARITIES.

Sickle Cell research needs more funds. So while we are speaking and teaching our love ones, we need to help fund the research so doctors can find us better solutions. Frankly, we need more breakthroughs than the non-universal bone marrow transplant that exist. We need more choices beyond Hydroxyurea to help those living with the disease to have less crisis, less organ failure, less complications. We need more options!

5. STOP SICKLE SEX.

The greatest change we can make in our communities is to stop Sickle Sex. What? What is that? Well, people who are trait carries should be fully aware of the debilitating consequences that can occur if they produce offspring that have Sickle Cell Disease. Use protection and be fully informed before you reproduce.

What make this disease so debilitating?

It changes the course of your life. Many people reading this will not truly understand what I mean until they see someone going through a Sickle Cell pain crisis. The crisis truly weakens the entire person and renders them helpless for hours or even days. Take a few minutes and imagine a child screaming at the top of their lungs for more than an hour because of the excruciating pain. Imagine pumping morphine into their little body and watching this veins pulsate. The picture is horrifying.

Everyday of my life has been changed by my daughter’s diagnosis. The disease has affected the foods we eat, the vacations we take, the activities we take part in, our exercise routines, the amount of rest we get, our work history, etc. My life is completely different than how I would imagine it if my daughter did not have Sickle Cell Disease.

What can you do to make a difference?

Help support a sickle cell charity and give blood!
Learn more about how people are affected by Sickle Cell Disease #30forSickleCellLearn more, check out my #30forSickleCell Posts below:

 
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