Caregivers & Sickle Cell Disease: One Mother’s Message Of Hope
It goes without saying that a mother’s love knows no bounds, as we all can name plenty of moms — including Adrene Williams — who would go to the ends of the earth if it meant protecting and providing for their children. “My life is about [my son]; he is my first priority — everything else comes second,” Williams tells ESSENCE. “I am his best advocate and he needs me, so regardless of what comes his way, I am ready for the challenge.”
As the parent and caretaker of a 13-year-old Sickle Cell Warrior, keeping that positive mindset while proactively helping to manage her son’s health is imperative.
“Sickle cell can be an invisible disease and most do not see what I see when I look at him. He is fighting a battle daily and enduring indescribable pain that most adults couldn’t handle,” she says. “Every decision is intentional, well-researched and made with careful thought and consideration, ensuring he has all the tools to make the best choices [to best help manage his sickle cell].”
Medically speaking, sickle cell disease (SCD) is a group of inherited red blood cell disorders, in which healthy, round red blood cells become hard, sticky and turn into crescent-shaped cells that look like a banana or a crescent moon. Once deformed, the unhealthy cells are known to both die early and have difficulty performing their main function: traveling through small blood vessels, carrying oxygen to the entire body. This in turn often causes anemia, a perpetual shortage of red blood cells, and clogging of the blood vessels.
“On our worst days, the gamut of emotions runs from fear, doubt, sometimes despair and intense sadness,” Williams explains. “It makes me deeply introverted but simultaneously more determined to never give up — that and [my son’s] million dollar smile that he flashes so generously, even when masking his pain. I will go to the ends of the earth to champion for his livelihood.”
While SCD affects roughly 100,000 Americans, it disproportionately occurs in individuals of sub-Saharan African descent. According to the Center for Disease Control and Prevention (CDC), about 1 out of every 365 African-American babies is born with sickle cell, and about 1 in 13 African-American babies is born with sickle cell trait (SCT).
“Before planning our family, I knew I was a carrier of the sickle cell trait and having this knowledge, I ensured my husband was tested also,” Williams recalls. “However, we later found out through several conversations [with] a hematologist that there were select genetic markers that were masked, so my husband’s blood work did not show him as having the SC trait.”
Since May 2006, all states have been required to provide universal newborn screening for SCD, an important development according to Williams, who remains a vocal advocate for early testing. “Now that testing is mandatory for children at birth, we were given the preliminary news and awaited the retest two weeks later. The results came back as positive and naturally, we were devastated,” she says.
Despite his SCD and the toll it takes on him, Williams’ son “tries to be as ‘normal’ as possible,” loves computer coding and discovering new foods — but most of all, remains a kind, wise soul. “I often attribute this to [his] daily fight to stay healthy,” she says. “It has matured him beyond his years and makes him resilient, tenacious and well-rounded.”
While parenting and caregiving go hand-in-hand, Williams points out that you don’t have to have children to become a partner in someone else’s care. “It is not easy being a caretaker, but caregiving is a rewarding experience. It brings you closer to your [loved ones] on a daily basis; it makes [my family] a well-oiled, connected machine,” she expresses. “The small victories and wins along the way are what keep me going.”
If you, too, have been impacted by SCD, read on for Williams’ advice and message of hope:
Williams on the importance of understanding of SCD and staying informed:
It is critical that you know your child’s genotype, stay vigilant with things like diet, exercise and medicines, because sickle cell patients can’t be painted with the same broad brush. One protocol might not work for the next patient and that is why advocacy is important. One must also become knowledgeable of SCD, in order to navigate the stigmas and healthcare disparities that can exacerbate the timely and proactive management of this complicated, painful disease.
Williams on establishing a transparent partnership with you or your loved one’s healthcare team:
With sickle cell, there are many physicians that make up [my son’s] team, including a hematologist, cardiologist, pulmonologist, acupuncturist, gastrointestinal specialist and a radiologist. And, it is very important to establish transparent partnerships with his healthcare team members [to ensure the quality of his care]. His medical team treats him as an individual, which is also important.
Williams on living life to the fullest:
I reinforce the message of living life as it is meant to be lived. You have to stay focused on moving forward; half the battle is keeping a positive outlook. Knowing that you are not alone goes a very long way, and having a strong support system is a tremendous help in overcoming SCD. Participate in support groups, create a list of foundations that specialize in blood disorders, maintain positive mental energy and overall, do not look at SCD as a “death sentence.”
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