Emmanuel & Eva Akese

“We are the parents of a sickle cell patient, and below is our experience with the disease.

Sickle cell is a disease that no one would wish on any child, however, some people have it, including our child, and it’s very important to learn about it, and manage it effectively.

With proper management such as consistency with appointments, taking medications as directed by doctors, hydrating well, staying cool in hot temperatures, and staying warm in cold temperatures helps tremendously to prevent sickle cell crisis.

Failure to properly monitor the disease recommended actions can cause a crisis, and could make the patient severely ill. This can mean extended hospital stays, and sometimes life threatening implications.

As a family that has to manage a sickle cell patient, the NESCC has been a great resource, and an avenue for support through programs, and conferences. At these forums we get to hear from doctors and practitioners, as well as other parents and learn about what works well versus what doesn’t. We also get to hear about research work in the field and the various efforts to find a cure to the disease.

Earlier on when our child was diagnosed with the disease, we did not know any better, and at the time the idea of taking the child to the ER every time they had a fever of 101 or higher was very challenging. Sometimes you get called from work because of a fever, and you would have to stop anything you are working on and reach home to take the child to the hospital. Those were difficult days.

However, with better management, prayer, and counseling, our child is doing very well, and the frequency of crisis and hospital visits have reduced drastically. Overall we have a better handle on managing the disease, and this has allowed our child to live a normal life like their peers.

In all this, our child’s doctors at UMASS Medical Center, and the NESCC have always been there through the process. Offering expedited assistance and support each time we have needed it.

This tremendous support has been Godsend, and it has made a huge impact on dealing with a child with sickle cell.

We have been blessed and we are grateful.”