In 2010, Kundeh Rosaline gave birth to a baby girl. She named her Kundeh Patience. Before her birth, Rosaline had no idea that she carried the sickle cell trait (SCT). After the delivery, she had no idea about her daughter being anemic. It was only during the child's 10years birthday when watchman Relief Association Global took the child for consultation that it was noticed that the child has been anemic for almost 10 years now.
After the Diagnostic, Madam Kundeh Rosaline knew that her daughter is going to die because her daughter is anemic. Due to the professionalism of the medical practitioner, he had to advise the mother to be calm and take all the necessary advise.
Finding and Sharing Resources/Information About SCD Patience Online and community resources and information about SCD were somewhat limited when WRAG found out about Patience diagnosis, but WRAG did have access to knowledgeable providers who helped to educate the first about the condition. There was also a sickle cell support organization in the country, but there was not an organization with an initiative that focused on SCD education. This is when WRAG decided to increase SCT awareness and to fill the gap in education about SCD. WRAG want to be a source of information and support for people who were going through the same things as it will and also help educate others about SCD. Today, Patience is not shy about sharing her condition with others and even help WRAG to educate people about SCD. “Most of the time, she is with WRAG at community SCD awareness events. She helps us pass out SCD flyers.”
Overcoming Challenges Associated with SCD Patience has experienced dactylitis (inflammation of finger/toe joint), leg/shin, ankle, and back) pain due to her SCD. At age 10, she also required a blood transfusion after developing acute chest syndrome, a common complication of, and leading cause of death for patients with, sickle cell disease.
Watchman Relief Association Global had to explain to Patience why it is so important that she takes her medicines every day. This symptom of SCD can be very discouraging, and weighs heavily on a child who is new to learning how to control bodily functions and trying very hard not to wet themselves.”
Tips for Others
WRAG has come out with the following:
*Education is key. Educate yourself as much as you can. Don’t believe hearsay. Get reputable information first-hand on how to effectively manage SCD.
*Be an advocate for your own health. Be involved in healthcare decisions.
WRAG'S advice for parents of kids living with sickle cell disease:
*Don’t be afraid to let your child be a child. What works for one, may not work for you. If something poses a problem, find alternatives and allow your child to choose among them.
* Find activities your child can participate in safely and that decrease the chances of leading to a hospital visit. If your child wants to go out and play in the snow, bundle them up and let them go out for 5–10 minutes and then have them come back in again and get warm. With proper planning and modifications, your child can enjoy many of the same things other children do.
*Start the transition process earlier. From pediatric to adult SCD care, start the transition process earlier on before it’s actually time for the transition to occur. Transition is the process of your child moving from a pediatric care provider to an adult care provider. It is also the period when your child becomes more responsible for his or her own health and healthcare. *Allow your child to speak during doctor visits. Assist your young adult child in setting up an appointment to meet with the adult care provider early on so that it’s not a cold handoff. This way, you and your child will know what’s expected and it will be easier on everyone.
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