By Presley Daley, volunteer contributor, American Red Cross North Texas
At the Red Cross, we raise awareness for those battling difficult situations to garner the support they need. Chronic disease has a massive impact on thousands across the world.
We are now working to raise awareness of Sickle Cell Anemia, a genetic blood condition that causes immune system disorders and low blood count. Our campaign aims to educate others on the severity of the disease by focusing on the lives impacted by it.
Despite the relentless efforts of communities, hospitals and organizations across the globe, sickle cell awareness is, unfortunately, low among the general population. We seek to change that by highlighting the stories of those affected, who also hope to spread the word.
One is Crystal Dawn, a Red Cross blood donation recruiter and mother of five young children. She emphasizes the importance of teaching them how to handle their unique challenges, which includes staying prepared for the triggers that cause symptoms to flare up.
“The kids need to stay hydrated–dehydration and water intake is a trigger,” she said. “We also have to be mindful of their diet. For my boys, when they have a crisis, it attacks their chest and can turn into pneumonia.”
Since the triggers can happen quickly and be very serious, Crystal makes sure her kids are aware of their limits as they navigate their own lifestyles. While they can partake in normal life activities like school and sports, everyone within the community around them must also be aware of their needs so they can be on the defense against possible dangers.
She makes sure to send her kids to school with plenty of water and ensures that the people who watch her kids are aware of their unique needs. This active awareness allows the kids to enjoy themselves and live as normally as they can while still being cautious.
“They still need to live life. This does not need to define them,” she said. “I have to allow them to experience things knowing what they can and can’t do.”
The difficulty of the situation is not limited to just the physical. Crystal describes what it has been like to support these children while also making sure they always have what they need. Throughout her experience as their primary caretaker, she has had to be the bread winner and the first responder. At times it can be nearly impossible to be both. Because of this, she emphasizes the need for strong community and family, appreciating how much of an impact they have made on her life as her family has faced uncertainty.
“If someone is hospitalized, I have to find someone to get the other kids. I have a group chat for people who can help when a crisis comes up,” she said. “Someone can stay with the other children, so no one feels alone or scared.”
While it is important for someone to be there to take of the other children when one is hospitalized, it is also important for every person with an active role in their life to know the technical safety measures needed when one is having a sickle-cell related crisis. If everyone is on the same page, anyone who enters a crisis has a much better chance of getting through it with fewer complications.
By the same token, it is important for the family to communicate their situation; a healthy community is built around openness. When thinking about the people in her life and those who have helped her, Crystal emphasizes the need for honesty with community.
“When COVID first hit, I didn’t want to put my children in jeopardy. I had them stay in their rooms, and family and church members would drop groceries on the porch for us,” she recalled. “A closed mouth doesn’t get fed. You have to communicate and let people around you know what you need.”
Crystal has had to strike a balance between caution and inspiration for her kids, teaching them to use the trust they have in each other to move forward, and never feeling tied down by their condition but emboldened to help others. These ideas of community, awareness and self-empowerment have worked together to inspire Crystal to help others dealing with the same struggle. She also would like to be a source of education to others so they can see how sickle cell impacts people.
“I am trying to start a nonprofit myself so my children can be leaders and voices in the community. I wasn’t interested in being a blood donor myself until I heard other peoples’ stories. And it’s something my children and I need to be a part of,” she said.
Of course, raising awareness around sickle cell disease and its complications is not complete without highlighting the need for blood donations, and Crystal understands the importance of advocating for thousands of people around the world who are faced with the constant need for it.
“I have heard of cases where people with sickle cell have had to wait because they don’t have the blood for them. Right now, there is a shortage of blood. A lot of people don’t realize that just one pint can save three lives,” Crystal said.
Sickle cell disease is not just a group of numbers and statistics on paper, but a collection of real humans and their stories.
At the Red Cross, we ask that you see and understand the people facing these obstacles so that you may be a source of hope for them by seeking education, raising your awareness and actively giving blood whenever you can.
Learn more about rolling up your sleeve to help donate blood or coordinate a blood drive visit RedCrossBlood.org.