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April Showers bring May...Updates from Sick Cells! 
 
Our May newsletter is all about Gary A. Gibson and the Martin Center Sickle Cell Initiative.

The Sick Cell team sat down with Gary Gibson and learned how he has taken it upon himself to make waves in Indianapolis and push for sickle cell to be recognized as a priority health concern.

We'll share highlights from that interview, b
ut first...
 

A Minute with Marqus

Hi everyone! April was quite the month. Both of my siblings were back in town and working together to turn Sick Cells into a reality. I'm still recovering from sepsis in July, so I am pretty tired and haven't been moving around too much. The week that Kevin and Ashley were home, I was able to work through the pain due to the excitement and joy of having my family working together to change the face of sickle cell.

Kevin worked the video camera and all things technology. Ashley ran ship by planning the week and keeping the Valentines on a strict schedule.  

Before leaving, I had to pack my usual list of:
  • medications 
  • portable oxygen machine 
  • car charger 
  • wall charger 
  • leg wound wraps and bandages 
  • leg wound creams
  • heat packs
  • cooler with liquids (gotta stay hydrated)
  • and, of course, clothes
After packing the essentials, we made it to Indianapolis for a fun-filled week with Gary Gibson and the Martin Center Sickle Cell Initiative.  

I want to give a sincere thank you to everyone that is fighting hard to bring sickle cell into the light. I'll keep fighting along with you. 
- Marqus
Marqus, Ashley, and Kevin Valentine just arriving at the Martin Center Sickle Cell Initiative

Updates on Sick Cells

Save the Date: June 19 kicks off Sick Cells Indiegogo Campaign
June 19 is World Sickle Cell Day and the kickoff of Sick Cells' 30-day Indiegogo Campaign. The team's goal is to raise enough funds to hire an editor and finally bring this film to life. Mark your calendars! 

Getting Pretty with Meaghan Cohen
The Valentines had their first photoshoot with Meaghan Cohen. The Valentines can be a tough crowd to wrangle and Meaghan Cohen did a fantastic job organizing the family to capture a day in their life with sickle cell.

Typical portraits of sickle cell patients only show people who are in the hospital or are 100% healthy. Meaghan was able to get some of the in-between moments that depict the day-to-day life of so many people with sickle cell.

Meaghan capturing Marqus and Momma Fran doing a leg wound dressing change
The Valentine Siblings Were Guests on Gary's Prime Time Radio Talk Show
Marqus, Ashley, and Kevin spent a week in Indianapolis with the Martin Center Sickle Cell Initiative. Gary Gibson sets the bar high for sickle cell advocates. The Valentines appeared on Gary's prime time radio talk show, Sickle Cell Action Network.  

Check out the full radio show.
 

All About Gary A. Gibson

A sickle cell pioneer, Gary works full time as the President and CEO of the Martin Center. He and his staff are working with Indiana Legislators and the state health department to create an emergency department education program. 

Gary published a whitepaper, addressed to the Centers for Disease Control and Prevention, urging the CDC to include SCD as a health disparity priority. We were fortunate to be around when the CDC responded to his whitepaper and traveled Indianapolis for a town hall hosted by the Martin Center Sickle Cell Initiative on April 21. 

The following day, Gary organized the Indiana Sickle Cell Conference where the Valentine's learned about updates in the field, clinical trials and what members of the community are doing to better the lives of those living with sickle cell disease.

The Interview - Why Sickle Cell?

Marqus Valentine (MV): What is your relationship to sickle cell disease?

Gary Gibson (GG): I have been involved with sickle cell for four decades.  My wife had sickle cell disease, SS.  We were together for 12 years as husband and wife.  She passed away at the age of 36 from complications resulting from her sickle cell. Because of firsthand experience as a caregiver, I became passionate about caring for those who have sickle cell.  

What are the goals of the Martin Center Sickle Cell Initiative?

Our goals are the aide and enhance the lives of those living with sickle cell and other related disorders.

Watch the full interview here.

Marqus interviewing Gary A. Gibson at the Martin Center Sickle Cell Initiative - Indianapolis, IN

Martin Center's Quality Improvement in the Emergency Department

MV: Can you tell us about your current quality improvement emergency department (ED) initiative?

GG: One thing that we have noticed over the years is that people with SCD said that going to the ED is not fun. Not only is it not fun, in many cases, it’s horrible. That doesn’t need to be true. We looked around the country and didn’t find any real models to help us. 

The project is designed to infiltrate hospital emergency departments and urgent care centers to try and ensure that providers are aware of the NHLBI Emergency Department Protocol for treating SCD patients in the ED.

Dangers of Long Waits in the ED

MV: I’ve had situations where I have had long wait times in the ED.  It’s hard to wait when you’re in pain. How many of your clients have run into some of these barriers?

GG: We started using a term called multi-system organ failure.  Anytime a sickle cell patient is in crisis, they are at risk for additional complications.  Some of those complications can be deadly. 

Our feeling is that when a patient is in crisis, any of their organs are in jeopardy.  If their organs are in jeopardy, then their lives are in jeopardy.  Ours hopes are to get people to act first and ask questions later.


Watch the full interview here. 

Psychosocial Disparities in SCD


MV: In your white paper, you talked about eliminate disparities at the psychosocial level. Can you talk a little bit more about that?

GG: We found that about 67% of them are in chronic depression.
 There are programs that are available to help with mental health but they’re not directly related to the unique complications and circumstances of a disease like sickle cell. 


Most people with sickle cell are absolutely fine intellectually. The problem is that if you are on Medicaid and social security and you start working, you have to leave those services.  That’s a real problem [mentally], for the patient because the patient knows that more than likely they’re going to get sick again. “More than likely I’m going to be in the hospital for a week or more.  There’s a strong possibility that I’m going to lose my job.”  

Watch the full interview here.
Marqus, Ashley, and Kevin cheesing after their appearance on the Sickle Cell Action Network

Share Your Sickle Cell Story 

GG: One of the things I wanted to say is that I’m so impressed with so many people with sickle cell disease and you’re among them.  Life is hard for anybody.  Particularly, I think life is very hard for people with SCD, and to see that there are people like you, who are not letting it beat them. 

I think the other aspect that I was referring to when I was talking about sharing your story with everyone is, not only will you connect with people and get them to care about the cause, but you will inspire them. 


Watch the full interview here. 
That's a wrap for the second edition of our Sick Cells newsletter. Reply to this message and let us know what you think and what you'd like to see more of!
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