Although the disease has taken her through the changes, she’s still here and making a difference.
Healthy red blood cells are round, moving through small blood vessels to carry oxygen to all parts of the body. If the hemoglobin is abnormal, red blood cells become hard and sticky and look like a C-shaped farm tool or a “sickle.”
The sickle cells die early, which causes a constant shortage of red blood cells. They also get stuck and clog the blood flow. This can cause pain and other serious health complications including infection, acute chest syndrome and stroke.
According to CDC.gov, sickle cell disease (SCD) affects approximately 100,000 Americans, occurring among about 1 out of every 365 Black or African-American births. It’s stated 1 in 13 Black or African-American babies are born with the sickle cell trait (SCT).
Misty Williams is a SCD warrior and this is her story.The oldest out of 14 children, Williams is a first generation, of Belizean decent, born and raised in Los Angeles, CA. Growing up with SCD, Williams had to grow up fast and ended up teaching her parents about living with her disease.
“Both my parents, were very good at learning what they could when I was a baby, but literally around the age of nine, I had learned so much, and was teaching my parents about my disease more and more,” said Williams. “What I’m amazed at is how hard they fought for me to get the best care, in Los Angeles.”
Utilizing natural remedies from her culture, along with faith in God, and medical care, Williams lived her life as normal as possible. She attended White Memorial Seventh-day Adventist Academy, a few high schools in the Los Angeles area, but graduated from Century High School. Williams went on to graduate from nursing school as a CNA from Los Angeles City College.
“As a child, I had a dream to become a nurse, social worker, and own my own sickle cell foundation,” said Williams. “I ended up doing all three in various ways.”
Her battle with SCD made many things a hard win and has taken a toll on her body over the years. She shared her health journey and what she has had to endure.
“I struggled with such bad, pain crisis as a child, where I couldn’t even walk, my father had to carry me into ERs,” said Williams. “Between the ages of 25 to 35, I suffered with congestive heart failure.”
She continued, “My ejection fraction was 25 and between the ages of 12 until now, at 40, I struggled with vascular necrosis, which is a condition of bone deterioration.”
Williams shared that she has undergone 16 hip surgeries, and one knee surgery: two on the left, fourteen on the right with seven done in the past two years during the COVID pandemic. It has cost her some chances such as not being able to accept a scholarship to Avondale College in Australia to continue her nursing career. Nevertheless, Williams has grown in her convictions of sharing the importance of SCD awareness.
“I really want people to understand that sickle cell disease, is a hereditary and lifelong disease,” said Williams. “Sickle cell is not just an African-American disease—it’s all creeds, and there is no universal cure for this disease.
She continued, “Although we are making strides, and there are at least four different types of treatments and research going on, only if you have been blessed to be cured from the disease. Which can still leave them, with issues they suffered through this disease, like still needing the hip surgery, or organ damage, etc.”
She’s been an SCD advocate since she was five-years-old, becoming a spokesperson for Children’s Hospital Los Angeles. At 14-years-old, she started putting together fundraisers and Christmas toy drives. She even got her family in on helping out.
“My parents opened up our home to all of sickle cell anemia patients, for our meet-ups,” said Williams. “They would make breakfast and make sure everyone had what they needed for our trips, picnics, etc.”
William’s first job was as a receptionist for the Sickle Cell Disease Foundation of California before she turned 17-years-old. She shared about learning a lot from Mr. Roger Brown and one of her first mentors, Brenda “Mother Love” Jones, who was a 60-year-old “SCD Warrior” herself.
“She did amazing things for the sickle cell community,” said Williams.
So, it’s not surprising in the least that Williams would eventually start her own foundation. Founded in 2011, the Misty Melony Sickle Cell Disease Foundation (MMSDF) started with action.
“I didn’t start my organization with paperwork, I started with a blood drive in 2011,” said Williams. “Two months later, paperwork was done and we began our mission.”
MMSDF, a non-profit that helps sickle cell patients at a particularly crucial in time in their lives. According to Williams, they focus on transitioning in every aspect of life.
“Transitioning is not just from pediatrics to adult physicians, but mental health, health, insurance, home life, education, careers, finances, and life goals,” said Williams. “We lose a lot of our patients between the ages of 18 and 26 because of transitioning.
“In pediatrics, we get the best care, spoiled even but, when it comes to adult care, it’s very difficult to find doctors who are educated well enough when it comes to sickle cell disease, who genuinely want to care and treat us.
“Our disease is known as an invisible disease, also as a difficult disease. But when doctors and nurses genuinely love helping people, have the empathy and great bedside manner, it makes a world of difference to a patient’s life.”
Williams eventually left nursing as the career demanded a lot from her emotionally and often left her in SCD crisis herself.
“As my mom told me, ‘Misty, you cannot keep bringing this home with you,’’’ said Williams. “I didn’t know what that meant but a few years later, I understood.”
She continued, “The stress that I took on were of my patients, seeing that, they weren’t always getting the best care when they needed it, I carried it for them. I would get sick and go into crisis myself at times.
“I never realized cooking was always there.”
She began baking bread and learning to cook vegetarian recipes from her grandmother as a child and took cooking class every day after school in junior high. In 2015, Willaims decided to go to culinary school and began a culinary career.
“I realized that I could still help my patients through my organization, and advocate for them at hospitals,” said Williams. “And found a lot of joy in cooking, but also cooking for a great cause, so, I still allowed myself to raise awareness even through my culinary endeavors.”
On September 30, from 10am-4pm, MMSDF will be celebrating Sickle Cell Disease Awareness Month with a Blood Drive at TGI Fridays located at 6721 La Tiera Blvd in Los Angeles.
“Celebrating my 40th birthday by giving back,” said Williams. “There is a blood shortage, so we need blood now more than ever.
“It’s a good way to kick off our organization coming back after COVID-19.”
For more information, visit MMSCDFoundation.org