“I wasn’t going to stay shut any more. For anybody.”
The American Red Cross Missing Types Campaign aims to call awareness to the need for a diverse range of blood type donations to help those with blood disorders, like sickle cell anemia. Only three out of 100 Americans donate blood, yet every two seconds someone needs it. You can help change that by joining the Missing Types movement and filling in the missing types. Find a blood drive in your area.
Remember when you were a kid and you couldn’t wait for the summertime? It meant the end of school, the start of vacation, and time to cool off in the neighborhood pool. While most dips in the pool are meant to be refreshing, imagine getting in the pool and immediately feeling an inexplicable pain — then, your body starts to itch all over. This is what happened to Iesha Stroud on a school trip when she was just 9 years old. Stroud was diagnosed at birth with sickle cell anemia, a blood disorder in which red blood cells form into the shape of a sickle rather than growing fully round. These misshapen cells die faster than healthy cells and can affect blood flow, causing extreme pain in those affected.
People with sickle cell often experience painful episodes during extreme hot or cold temperatures, which is what Stroud felt that day in the pool and on many days after. “My mom always told me I couldn’t do things like other kids,” she says, and for a long time, she believed it. Stroud was limited in what she could do — both because of her mother’s fear that she would have a sickle cell symptomatic episode, and because of her frequent trips to the hospital.
“For me, there were different levels of pain: There was tolerable pain or pain that I could just take medication for and be fine. But sometimes I would get pain so bad, I wished someone would just saw my head off,” says Stroud. While this amount of pain may be incomprehensible to most, it’s a reality that those with sickle cell have to live with throughout their lives. This pain — and not knowing when an episode will strike — is something that made growing up as a “sick kid” very difficult for her.
“[Growing up] my classmates knew I had sickle cell. Teachers would say [to the class] ‘Iesha isn’t here today because she’s sick.’” But being sick and out of school regularly wasn’t the only struggle she had. “[Because of my disease] I was picked on a lot. My body didn’t fully develop until I was a junior or senior in high school, and people would always look at me and say ‘Oh, she’s different,’” recalls Stroud. While Stroud had some friends in school and the support of her family, she eventually began to see herself as her classmates did: differently. Though Stroud describes her younger self as being shy and reserved, she has no doubt that her classmates’ view of her made her even quieter and lowered her self-esteem over time.
That is, until one day when she got into a fight at school and ended up getting expelled. “I don’t remember what the fight was about…I allowed people to walk all over me [and one day I’d had enough]. That experience made me come to a realization: I’m going to embrace who I am… I wasn't going to stay shut any more. For anybody.”
While sickle cell is a life-long disease with no cure, pain and symptoms can be managed with blood transfusions, medication regimens, and in rare cases, a bone marrow transplant. Blood transfusions increase the number of normal red blood cells, helping to deliver oxygen throughout the body and unblock blood vessels. Patients who battle sickle cell disease may face a lifetime of blood transfusions and rely on the generosity of volunteer blood donors to ensure help.
According to the National Heart, Lung, and Blood Institute, after being diagnosed, “the goal is health maintenance to prevent complications and medicines and treatments to manage complications.” The Institute recommends seeing a doctor every three months to one year, depending on the person, in order to make sure treatment is remaining effective. The biggest symptom of sickle cell is chronic pain, and while the recommendation for pain management is taking medication, if the symptoms cannot be lessened at home, then a visit to the hospital for stronger medication might be necessary.
“I have been extremely blessed as far as my hospitalization goes,” says Stroud. “On average, I only go once or twice a year. I get IV infusion treatments to prevent long-term hospital stays and take medication to help with the pain.” But it’s been a long road to get Stroud to that comfortable place, and others with sickle cell are not always as lucky, “[Sickle cell] is just as bad as cancer,” she says. “Some of the medication we take can have adverse side effects where we can lose hair, get black fingernails or toenails, can go blind, and even die. [The medication] is not a guaranteed pat-on-the-back that you’ll be OK.”
Stroud says it’s important for those who do not have sickle cell to understand how a life can be impacted on a daily basis because of this disease. Aside from the constant pain, medication, and treatments, “people (especially employers) have to understand that at any minute, I can get sick and need to be in the hospital for two weeks. [At a moment’s notice, this disease] can change your lifestyle completely.” Stroud has learned not to hide from this fact and instead to embrace her disease: “Now I make it known that I have sickle cell. I’m not ashamed of it any more.”
Shroud calls sickle cell an invisible disease — because unless you’re in the medical field, have sickle cell, or know someone who has it, chances are you don’t know anything about it. “It’s considered a black disease,” says Shroud. “Knowing the disadvantages that black Americans have in [our society], just imagine that [inequality] translated into a disease. That’s why it’s invisible,” she says.
The CDC estimates that one in 365 African American newborn infants are diagnosed with sickle cell. According to the CDC, sickle cell “occurs more often among people from parts of the world where malaria is or was common. It is believed that people who carry the sickle cell trait are less likely to have severe forms of malaria.” This disease affects millions of ethnicities worldwide. While it is most commonly found and diagnosed in those of African and Hispanic descent, others who have southern European, Asian, Indian, or Middle Eastern backgrounds have also been diagnosed.
“This disease does exist,” says Stroud, “and it’s important to take precautions.” She encourages people to get tested to see if they are a carrier for the disease before conceiving children: “There’s nothing like a parent being unable to help their child in a situation when they’re in pain. I know that sticks with my mother [because both me and my brother have it] and she couldn’t help us when we were in pain.” The National Heart, Lung, and Blood Institute recommends this testing too and also advises those who have the trait to discuss options with a genetic counselor.
In an effort to make this disease more visible, Stroud raises awareness by joining sickle cell charity walks, raising money for the cause, and posting about sickle cell on social media whenever she can. She graduated from Southern Connecticut State University with a bachelor’s degree in political science and recently graduated from Naugatuck Valley Community College with a certificate in paralegal studies. Her goal is to become a judge. “[Sickle cell] taught me determination to never give up. There are a lot of things that I cannot do and I could just pin it on my disease. But I don’t do that. I won’t do that… I embrace my disease.”
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