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Sickle Cell Disease 101: A Chat with Sickle Cell Warrior Nicklaine Paul

More than 100,000 people have sickle cell disease in the U.S. and many require regular blood transfusions throughout their lifetime. Blood transfusions help manage the severe pain and long-term health issues of those with the disease. That’s why, it is so important for individuals of the same race or similar ethnicity and blood type of sickle cell warriors, to donate blood. Blood donations can provide patients who are experiencing a sickle cell crisis the best chance at recovery.

Even though sickle cell disease was discovered over 100 years ago, there are not many resources for those suffering and many people are unaware of the health disparities involved. To give you more of a breakdown on what sickle cell disease is and who it affects, Red Cross Biomedical Communication Specialist Tiffany Taylor sat down with sickle cell warrior and nurse Nicklaine Paul during a recent live discussion to give you the 411.

What is sickle cell disease?

“Sickle cell disease is a red blood cell inherited blood disorder. It is in your genes. You don’t catch it. You don’t give it to anybody else. However, when you partner with somebody that has the trait or is also a carrier, you can give it to your offspring. That’s something we are trying to raise awareness on because one in every 12 to 13 African Americans or those who identify as Black carry the sickle cell trait.

Normally, your red blood cells are round, donut shape, flexible, able to move about in blood vessels through your body. Oxygen is food to your tissues, your organs, your bones and when cells are healthy, they can do what they were designed to do, which is transport oxygen. In sickle cell disease, you have a mutation in that genetic code that says, ‘In low-oxygen areas, I’m going to sickle.’ Therefore, with the sickled red blood cells, you have clumping that happens and prevents less oxygen to get through. It causes pain and swelling deep inside your veins. It can cause a lot of complications, and if you’re not getting proper oxygen to your brain, you could have a stroke. If you’re not getting proper oxygen to your skin, you can have ulcers. Even to your eyes, you can have vision impairment.”

What are some health disparities patients with sickle cell are facing on top of battling the disease?

 “To talk about health disparities, we really have to understand they’re driven by social and economic factors. Sickle cell affects mostly those who are Black and brown. So, when you have an already disadvantaged population who now has a chronic illness, oftentimes, they have an impact on their health due to access to care. There’s a discrimination factor that plays into it with racial makeup and socioeconomic status that really helps to impact that individual and not in the best ways. Depending on housing, finances, food, access to care, transportation- these are some things you have to understand and what is called social determinants of health. Clinical decisions and recommendations and medical care make up about 10% of successful health outcomes. But as a whole, patient choices are derived from their social, economic, racial makeup and everything that affects about 60 to 80% of your successful health outcome.

Why do I stress that? It’s because if someone is already disadvantaged, they are now even more disadvantaged. We are now trying to improve the quality of care and the compassionate care that everyone deserves. It should not matter what you look like, where you live, or who you know that allows you that quality of care.”

Why are blood transfusions so critical?

“We rely on the public and healthcare professionals to really understand the need for increased blood donations that can help save our lives. And I say our lives because I’ve needed blood in my life. Living with sickle cell disease, I received a lifesaving blood transfusion when I was five years old. Being a nurse, I have been on that side of the fence where I’ve been given many transfusions. With sickle cell, we need to remember that it is a form of hemolytic anemia, meaning, the red blood cells are destroyed. A healthy red blood cell is supposed to last about 120 days, give or take. Sickled red blood cells last 15 to 20 days. That is a big difference. So, if you have an infection, where more sickling is going on because there’s less oxygen, we need to have blood on hand for the ready.

Individuals who are doing chronic therapy and getting blood transfusions every month can require upwards of hundreds of units in a given year. That’s why we’re really encouraging blood donations because this is a very unpredictable, intricate, complicated chronic illness.”

What are some actionable ways people can help those with sickle cell?

 “I feel like it’s that common phrase of knowing better, you do better. To support us in our community, we need to help ourselves. Individuals need to be able to openly share their experiences and not feel stigmatized or judged or assuming one thing. When we’re able to openly share, educate each other and become more aware of how prevalent this really is. 100,000 people in the U.S. are living with sickle cell disease.

I think we need to really heighten that up. Be a sponsor for a blood drive. If you can’t donate yourself, maybe you can help to be somebody that can facilitate a blood donation drive, and really be part of and be aware of resources and community-based organizations that are doing this work in the community. Volunteering or being a part of any of their fundraising. Sometimes we have walks for sickle cell or bike rides – get involved.”

You can catch more of this discussion and learn further about Nicklaine’s advocacy and journey with sickle cell disease on our Facebook page here.

Additionally, if you felt inspired by Nicklaine’s story and want to help make a lifesaving difference, here are some easy steps you can take today: