Jasper House aims to make you take Sickle Cell Awareness Month seriously — all year

As National Sickle Cell Awareness Month winds down, it’s key to take a deeper look at the ailment that afflicts approximately 100,000 Americans. Sickle cell disease (SCD) is a group of inherited red blood cell complications. By definition, according to the U.S. National Library of Medicine, “If you have SCD, there is a problem with your hemoglobin. Hemoglobin is a protein in red blood cells that carries oxygen throughout the body.” The aftermath of this complication is debilitating pain.

Also, when these moon-moldered cells hook into the body, they become less flexible and obstruct blood flow. With the compounding symptoms of pharmaceutical constraints in the United States’ healthcare system, Black and Latinx populaces make up the largest demographic of SCD patients. More specifically, per The White House, “This condition also disproportionately affects Black and Brown Americans, with an estimated 1 in 365 Black Americans… suffering from it.”

Your recent Jasper House Warriors video stated, “We are seeing how important it is to have adequate medical service and medical rights.” With respect to service, please explain your involvement in Assembly Bill-1105. 

How did this bill impact five comprehensive sickle cell disease facilities?

Can you detail the time spent leading up to receiving a unanimous “yes” at the California State Capitol?

Tony brought me in as the testimony of the bill. We answered questions of senators including the Congressional Black Caucus. We were telling them, “We are being subjected to discrimination. We are dealing with unbearable pain.” For example, I have had 10 surgeries myself. I was proposed to pass at 7. Here I stand at 33. [Following,] I started Jasper House Warriors. 

There was no public figure with sickle cell. I learned about T-Boz later. 

Growing up, the figures who gave me motivation were people like Kobe Bryant. Of course, my mother [inspired me]. She had to literally become like a doctor to raise me. She quit her profession to make sure I had a dream.

Great question. [My perseverance] represents more of what we have done on our own. I think [surpassing a negative expectation] should be the opposite of making a medical professional look heroic. It should make them look ignorant. Excuse my language. 

The month of September is Sickle Cell Awareness Month. Your involvement is year-round with the Jasper House Warriors. How did your mental health and sickle cell disease organization come to be?

One thing that I began noticing was young adult struggles. I would hear how the sickle cell was holding them back. That led me to go to school to receive my clinical psychology degree and start Jasper House Warriors. We were not handling our mental health dealing with a life-threatening chronic disease. I try to live a life that shows them you can do whatever you put your mind to.

Mental health is everything. It is how we treat people. It is how we feel about ourselves. If we could have better education and perspective on dealing with depression, anxiety, or our emotions, I think our society would be a little better. 

We deal with red cell dysfunction. They can create debilitating pain episodes. They can last between seven days to 14 days. I have also had two hip replacements. Again, I am only 33.

How can readers become involved to assist sickle cell disease survivors in their communities and beyond?

Recently, Jasper House Warriors had a comprehensive COVID-19 awareness discussion. What are some unique circumstances people living with sickle cell disease have to navigate during this pandemic?

It was important to get people to take the vaccine and COVID-19 seriously. [We needed] to answer any questions they might have concerns about. For example, will COVID-19 vaccines affect sickle cell medication or treatment? We tried to educate and protect our community at the height of the pandemic. 

PicnicHealth offers a service that will collect your medical records and organize them. You have access to them online or on your phone. It was important for Jasper House to partner with them because often when we go into the hospitals, we are being told what our treatment should be. 

A significant concern for sickle cell disease patients in the Los Angeles area is the mortality rate. Please elaborate. 

Further, women with sickle cell disease are dying during pregnancy. They are not being listened to based on their pain. Black men are just being treated like drug addicts. You have this young man coming in shaking, sweating, and crying. He is asking for pain medication. 

Now is an unusual time for young people and politics. Governor Newsom recently persevered through a Republican Recall in California. Jasper House Warriors launched a ​’This Warrior Voted’ Campaign. Why is mobilizing in our communities vital to you? 

We get there are a lot of [thoughts] around whether voting works or not. 

In what ways can readers become involved with your causes immediately? 

What is your mission/next with Jasper House Warriors?

What do you feel some of those plagues are?

We also need to house our own medical facilities. We have many [neighborhoods] within L.A. Still, all the mental health calls go straight to Los Angeles County. So, this includes Inglewood, Compton, and Watts health calls all going to one source. We can have hubs. We want to advocate on behalf of that and get more services in our communities. 

I want to be remembered as a person who did not give up. Hopefully, that shows people that if we stand together as a community, we can accomplish anything. We can live a better life. Everybody is dealing with something.

We need to get beyond acting like we are all perfect and judging people as if we are perfect. Try to connect. We can be there for each other. For people with sickle cell, I think there is a new day coming. It will be for the next generation, but we have to continue to fight those battles and not give up.