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caring for sickle cell disease: building community and adapting to uncertainty
to prepare herself to look after her child with sickle cell disease, dwijnie jeanty started asking herself, “where can i find the information, the services and all the stuff?”
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dwijnie jeanty now speaks to other parents in her shoes, letting them know that people can enjoy life living with sickle cell disease. her daughter is proof, because she still swims, travels, and does all the things she likes to do as a 15-year-old girl.
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dwijnie jeanty’s daughter was diagnosed with sickle cell disease shortly after she was born.
“that was a shock for me,” said dwijnie. “i was crying. i was mad at myself, and i didn’t know what i was supposed to do.”
dwijnie didn’t really know what sickle cell disease was, nor did she know how to approach the situation to ensure that her newborn would be okay. fifteen years later, after having gone through the system with her daughter, she is now well-versed in what it takes to care for someone living with sickle cell disease and navigating a healthcare system after learning of a diagnosis.
in the beginning, dwijnie blamed herself and wanted to retreat away so she didn’t have to deal with it, but once she got over the initial impact of hearing that her child had sickle cell disease, she did everything she could to learn about the disease and find out what her child needed going forward.
she notes that other parents in her shoes may do the same, but it’s important not to sit in the shock for too long.
“they need to be open, first of all, and go to find the needs, the help. because when you’re still in shock or denial, you’re not going to provide, you’re not going to go through the treatment,” she said.
learning and preparing for a lifelong journey with sickle cell disease
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to prepare herself to look after her child with sickle cell disease, dwijnie started asking herself, “where can i find the information, the services, and all the stuff” she would need to ensure that her daughter had the best care possible.
she wanted to be as prepared as she could be, so she started back at the hospital where her daughter was diagnosed.
there, she met with medical professionals who could not only provide her with resources to learn more about sickle cell disease, but also to process what it meant for her daughter’s life going forward.
when she was working with her daughter’s care team, she was also given choices when it came to her medical treatment. she never felt pressured to take one or the other and chose the one she was most comfortable with.
“fifteen years later, we still go with that,” she said of the treatment that has worked well for her daughter throughout her life.
she also learned that with sickle cell disease, there will be good days and bad days, and she should prepare for that.
“when she was younger, i used to have, in my car, a bag that had stuff to stay in the hospital,” she said, noting that a call could come anytime from her daughter’s school letting her know that she had to come get her and take her to the hospital.
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dwijnie also had to adapt to the changing tides of her daughter’s disease because she couldn’t be with her at all times, and a crisis can happen at any time, especially if people don’t follow certain protocols.
“she’s in school now. i already put the protocol to the school and she said to the teacher she can’t go outside without a jacket and they said no and they forced her to go without the jacket, and that day, when she come back home she had a crisis,” said dwijnie.
she then had to take her daughter back to the hospital, noting that every time her daughter goes out, “i’m scared.”
sickle cell disease can cycle between days when a person feels well and days when they experience sickle cell crises. dwijnie is referring to the days when her daughter experiences a sickle cell crisis, which occurs when sickle cells clump together and block blood flow in the body, causing severe pain in various areas, including the abdomen, chest, and bones. they can be triggered by things such as dehydration, cold or stress. or other illnesses and requie medical treatment to prevent, in some cases, life-threatening complications.
she notes that things get easier when you learn about everything that needs to be done and listen to the advice of your medical team.
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“make sure you go to the appointment, make sure you take the medication. sometimes, the doctor or the nurse is there for you. talk to them. they will understand,” she said. “don’t be afraid to educate your kids also, because i did that for my daughter.”
she’s grateful that she was able to give her daughter the care she required through the years and followed the instructions of her care team, because today, now that her daughter is a teenager, she has the result proving that it works.
finding your village
as the years passed, dwijnie got to know more people in the sickle cell disease community. in doing so, she realized that she didn’t have to face this journey alone.
dwijnie got involved with the association d’anémie falciforme du quebec, an organization in quebec that helps people with sickle cell disease and their families improve their quality of life through different programs.
dwijnie notes that they’ve provided great support in the time she and her daughter have spent there in various ways, from helping with the mental health aspect of living with sickle cell disease to providing activities for both kids and adults to enjoy.
“sometimes they make activities for the youngest ones, parties for the halloween, the christmas,” she said, adding that they sometimes offer financial assistance to help people attend these activities if they don’t live in the area.
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in addition to the organization, dwijnie also notes that leaning on others in her community, such as family members and friends, people at the school, or the church, is a great way to take some of the weight off your shoulders when you live with or care for someone with sickle cell disease.
“don’t be afraid to talk to your community … because they can save their life,” she said.
she also notes that talking to others can ensure that when you need help, there are people there who understand why and are able to give you what you need. dwijnie knows that it’s a challenge to ask for help, but without it, “it’s going to be tough.”
“sometimes i need someone to come and stay with my daughter … and my village support came and helped me,” she said. “don’t be afraid to say, ‘i need help.’”
accepting what is and finding ways to enjoy life
it can be difficult to accept when you have a child with a chronic disease, but dwijnie notes that accepting it for what it is will make the entire process that much easier for both the caregiver and the person living with the disease. she knows from experience.
“it’s okay to be mad,” she said. “but after that, go get the help. not for you. it’s for your kids … when you see the smile of your kid when they come after treatment, it’s better for you. no parents like to see their kids suffering. i did so many times.”
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through learning and accepting what it required to help her daughter live her best possible life, dwijnie has ensured not only that her child is better off but also that she gets to enjoy her life.
dwijnie now speaks to other parents in her shoes, letting them know that people can enjoy life living with sickle cell disease. her daughter is proof, because she still swims, travels, and does all the things she likes to do as a 15-year-old girl.
“enjoy life with your daughter, with your kids … because they’re still kids,” she said.
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