TO ADHERE TO TREATMENT SICKLE CELL PATIENTS NEED TO BE EDUCATED

In her debut memoir Living with sickle cell disease: The struggle to survive, Judy Gray Johnson 72, one of the longest living person with Sickle Cell Disease recollects that she was 16 years in 1959 when she had gone with her aunt to a doctor who diagnosed her with Sickle Cell Disease. She writes that the social mores of that time dictated that adults discussed nothing of substance with children. She was never told anything concerning Sickle Cell Disease.

It may seem that was for the 1950s or for the last century and never crossed into the 21st Century (2000s) or the information age. That has not been the case, in 2002 when I was first diagnosed with sickle cell 43 years after Judy was diagnosed it was the same story for me..

"That’s a universal situation. Most Sickle Cell patients lack knowledge about their condition"

I was 12 years then, when the doctor handed the results to my father nothing was taught to me about the disease I was going to live with for the rest of my life. It was only the cocktail of drugs prescribed after the diagnosis that was explained to me.

Were these people reading the same script? It’s the question I still ask myself.

That’s a universal situation. Most Sickle Cell patients lack knowledge about their condition. Some patients finds themselves in dilemma when they don’t know the symptoms, warning signs when a crisis is going to happen and what to do to arrest a crisis.

Patients with Sickle Cell need to be better educated about their health. Most are less likely to get accurate information about their disease. One mother to a Sickle Cell warrior daughter shared her experience with a nurse; she revealed that a nurse who even treats other Sickle Cell warriors told her that Sickle Cell is infectious and any person can get it even later in life. If a medical personnel can give unforgivable information like this, I don’t this this nurse can give correct information about treatment and how to avoid a crisis.

"The most difficult stage for people living with Sickle Cell Disease is transition from pediatric to adulthood. Because previously it was difficult to find many adults living with the disease,"

Still some of the patients lack a better understanding of many symptoms of Sickle Cell and there is a need for improved patient education. Improving patients understanding about why a particular treatment is important for an individual situation may lead to more informed decisions and better adherence to treatment.

A better comprehension of one’s symptoms and reasons for personalized treatment recommendations also could improve a patient’s trust, confidence and satisfaction with primary treatment provider.

The most difficult stage for people living with Sickle Cell Disease is transition from pediatric to adulthood. Because previously it was difficult to find many adults living with the disease, so all the efforts and resources were channeled to caring for children with Sickle Cell. The situation has now changed and sicklers progress to adulthood.

So now there is a need to have a special education programme for adolescent and adult patients. The programme needs to cover issues like the reasons for taking daily drugs, different pain coping methods and reasons for delayed growth. This can also reduce on the stress experienced by most teens.

A comprehensive patient education program can focus on connecting adult patients with sickle cell disease with primary care providers and support the relationship. Help older adolescents and young adults with Sickle Cell Disease to transition smoothly from pediatric to adult primary care doctors and finally primary care providers to care for people with sickle cell disease of all ages and provide necessary tools to deliver high quality care.

Love Life!

Ssebandeke Ashiraf

Catch up with me HERE where you can read more of my written pieces on Sickle Cell Disease.