Sickle Cell Awareness Is More Than Knowing the Name
Share
September is Sickle Cell Awareness Month, but awareness has to go deeper than recognizing the name of the disease or sharing a graphic once a year.
True awareness means learning what Sickle Cell Disease is, understanding how it can affect the entire body, listening to the experiences of the warriors living with it, and recognizing the families and caregivers who walk beside them. It also means remembering those whose lives and stories still deserve to be honored.
For me, this cause is deeply personal.
Tony’s Strength Was More Than a Phrase
My husband, Tony, lived with Sickle Cell Disease from birth. Throughout his life, he endured pain crises, emergency-room visits, hospital stays, surgeries, blood transfusions, and more than most people ever knew.
Even on some of his worst days, Tony rarely complained. When he was in pain, when his body was exhausted, and when he had every reason to ask, “God, why me?” he continued to endure. He did not allow everything happening to his body to change the way he treated other people.
If you asked him how he was doing, his response was often:
“I’m still breathing. I can’t complain.”
Those words did not mean that Tony was not suffering. They were not a denial of his pain, and they should never be used to suggest that another warrior must hide what they are experiencing. They reflected Tony’s personal way of holding on to gratitude while living through circumstances that were anything but easy.
Over the years, I watched Sickle Cell Disease take an increasing toll on his body. Eventually, the damage contributed to kidney failure, and dialysis became another part of his medical journey.
Tony looked forward to receiving a kidney transplant. He hoped it would free him from dialysis and allow his body to regain some stability. He knew a new kidney would not take away his Sickle Cell Disease, but he believed it could give him a stronger chance to continue fighting and moving forward.
By the time he reached the point when a kidney might finally become available, we learned that his body was no longer strong enough to undergo the transplant. That news came less than a year before he passed away.
It was heartbreaking to watch him come so close to something that represented so much hope, only to learn that his body could not withstand it. Yet even after that disappointment, Tony continued to be Tony. He continued caring about other people. He continued encouraging them. He continued showing up in whatever ways his body allowed.
There were times when Tony was physically in the hospital and did not tell people because he did not want them to worry. Someone could call him with a problem, and he would listen, encourage them, and be there for them without explaining everything he was facing at that moment.
That is the part of his journey I want people to understand.
Tony was more than a man with a memorable phrase. He was a man whose body endured years of pain and medical complications while his spirit continued to carry strength, compassion, faith, and concern for others.
The phrase became part of Wade Designs because we created it together. It remains part of his legacy, but his legacy is much bigger than those words. His legacy is also the way he lived them.
Sickle Cell Disease Affects More Than Most People Realize
Many people have heard the words Sickle Cell Disease but do not understand what the disease actually does.
According to the Centers for Disease Control and Prevention, Sickle Cell Disease is a group of inherited blood disorders. It affects hemoglobin, the protein in red blood cells responsible for carrying oxygen throughout the body.
Healthy red blood cells are flexible and move easily through blood vessels. With Sickle Cell Disease, red blood cells can become hard, sticky, and shaped like a sickle. These cells may die early or become stuck in small blood vessels, blocking blood flow and preventing enough oxygen from reaching different parts of the body.
This can cause severe pain, but Sickle Cell Disease is not only about pain crises.
It can affect the brain, lungs, heart, kidneys, liver, eyes, bones, joints, and other areas of the body. The National Heart, Lung, and Blood Institute explains that the disease can lead to serious complications, including organ damage.
Frequent blood transfusions, while medically necessary for some patients, can also cause iron to build up in the body and may require additional monitoring and treatment.
This is a lifelong disease that can affect nearly every part of a warrior’s health.
The Journey Also Includes Families and Caregivers
Sickle Cell Disease affects the person living with it, but the journey does not stop there.
Families and caregivers are often helping manage appointments, medications, emergency-room visits, hospitalizations, transportation, insurance concerns, work schedules, household responsibilities, and the emotional weight of watching someone they love experience repeated pain.
They may be advocating when a warrior is too exhausted to advocate for themselves. They may be sitting beside a hospital bed, waiting for answers, making difficult medical decisions, or trying to hold the rest of the family together.
Their support matters, and their experiences deserve to be recognized too.
We must also remember the families who have lost someone to Sickle Cell Disease. Their loved one’s story does not stop mattering because that person is no longer physically here. Their life, courage, impact, and legacy still deserve to be spoken about.
What I Will Be Sharing This Month
Throughout the rest of September, I will be using the Wade Designs platforms to share:
- Educational facts about Sickle Cell Disease
- Information about how the disease can affect the entire body
- Recognition and encouragement for Sickle Cell warriors
- Support for families and caregivers
- Pieces of Tony’s life and medical journey
- Tony’s strength, compassion, and continuing legacy
- Ways people can learn, advocate, and offer meaningful support
I will also be sharing videos throughout the month on Instagram, TikTok, and Facebook. Through those videos, I will continue sharing educational facts, pieces of Tony’s journey, and messages of support for warriors, families, and caregivers. I invite you to follow along as we learn, support, and remember together.
I will not try to tell every piece of Tony’s story in one video or share his entire journey at once. His life cannot—and should not—be reduced to a few minutes of content.
Instead, I will share his story in pieces, with care, while weaving education throughout the month. My hope is that people will walk away understanding more than they did before—not only about the disease, but also about the human beings and families behind the diagnosis.
Supporting the Cause
Wade Designs has a Sickle Cell Awareness collection that remains available throughout the year. It was not created simply for September, and it will not disappear when Awareness Month ends.
The collection is there for anyone who wants something that honors a warrior, supports a loved one, or helps begin a conversation about Sickle Cell Disease. However, this campaign is not centered on selling products, and purchasing an item is not being presented as a charitable donation.
For those who want to support Sickle Cell advocacy directly, the Sickle Cell Disease Association of America is the organization I have consistently supported. I encourage you to visit its official website to learn more about its work, access educational resources, and explore opportunities to donate or become involved.
You can also support the cause by learning the facts, listening without judgment, sharing reliable information, supporting the warrior or caregiver in your life, and helping other people understand that Sickle Cell Disease is much more serious than many realize.
Learn. Support. Remember.
I am sharing this information so Tony is not forgotten.
I am sharing it for the warriors who are still fighting.
I am sharing it for the people caring for and standing beside them.
I am sharing it for the families carrying the loss of someone they love.
Sickle Cell Awareness Month is about more than knowing the name of a disease. It is about understanding the reality of living with it, honoring the warriors and families affected by it, and remembering the people whose stories still deserve to be told.
Learn. Support. Remember.
Awareness is understanding.