Sickle Cell Disease Journey

Caregivers’ Experience With Sickle Cell Disease (SCD) Patients

In January 2009, Cynthia Kwamboka gave birth to a baby girl, Calister. Before her birth, Cynthia had no idea that she was a sickle cell carrier. It wasn’t until one of her prenatal visits that her doctor told her that she and her husband both had SCT (sickle cell traits) and that their daughter would have a 25% chance of having sickle cell disease.

The doctor provided her the option to speak with a genetic counselor to determine possible next steps for her pregnancy. Because of her strong faith, Cynthia chose to carry the pregnancy to 9 months.

Sickle Cell Disease Overview

Getting the Diagnosis

When Calister was born, the doctor tested her for SCD, and Cynthia was comforted to learn that her daughter did not have the disease. However, this comforting feeling did not last long. After a month, Calister started getting sick.

Cynthia took her to the clinic, and the test was repeated. The results showed that Calister had SCD.  This news was a frustration to the family. “It was like I got the wind knocked out of me,” said Cynthia

Did she know about SCD?

Information about SCD was somewhat limited when Cynthia found out about her daughter’s diagnosis, but she did have access to knowledgeable providers who helped in understanding the condition.

Her hematologist (a blood disorders specialist), Dr. Mophat Asima, and her nurse, Joyce Chepcheben, were an incredible source of information, giving Cynthia a handbook that entailed all the information she needed. This is when Cynthia decided to start a foundation known as Life beyond today’s foundation to increase SCT awareness and to fill the gap in education about SCD.

She wanted to support people especially parents and caregivers who were going through the same things as she. Calister has been empowered by her mother and is not ashamed of sharing her condition with others.

“She goes with me at community SCD awareness events, helps me pass out SCD flyers. She explains her condition to the public. She uses words like, “my blood cells are sticky and shaped like bananas, not like donuts. They stick together and make my legs hurt. This simplifies the understanding in a Leigh man’s language”.

“Blood cells are sticky and shaped like bananas, not like donuts. This simplifies the understanding in a Leigh man’s language”.

Dealing with challenges associated with SCD

Calister has experienced dactylitis (inflammation of finger/toe joint), leg/shin, ankle, and back) pain due to the disease. At age 3, she also required a blood transfusion after developing acute chest syndrome, a common complication of, and a leading cause of death for patients with, sickle cell disease.

Potty’ training was also a challenge according to Cynthia. “Because of the need to drink more water to prevent SCD pain episodes, combined with the effects SCD has on the kidneys and their ability to concentrate urine, enuresis (bedwetting) can be a problem for children and teens with SCD.

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.”

“I let her live like other children, inclusive of any activities that she finds interest in, however, she makes some adjustments and/or accommodations for SCD. For instance, she needs to stay hydrated during physical activities class to make sure that she does not over-exert herself” says Cynthia.

“I have to make sure she understands her need to take breaks when she needs to and talk to the school staff to make sure they understand her needs too. There are no limitations to what Calister can do, but modifications may be needed.”

Cynthia’s advice to parents/caregivers.

• Let your child be a child. Do not limit him/her from playing. Find activities your child can participate in safely and that decreases the chances of leading to a hospital visit.
• The transition process should start earlier. 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 for everyone.