Tuesday, July 12, 2011

Has the govt neglected the plight of sickle cell anemia patients?

Written by Daniel Saenyi

The mian entrance to the Bungoma District Hospital. The hospital receives atleast five sickle cell anemai pateints every month yet it lacks facilities, drugs and expertise to deal with it.( Photo Courtesy)
Sickle cell anemia is a blood disorder that affects hemoglobin, the protein found in red blood cells (RBCs) that help carry oxygen throughout the body. Sickle cell anemia occurs when a person inherits two abnormal genes (one from each parent) that cause their RBCs to change shape.
Instead of being flexible and disc-shaped, these cells are more stiff and curved in the shape of the old farm tool known as a sickle — that's where the disease gets its name. The shape is similar to a crescent moon.
Having sickle cell disease means a lifelong battle against the health problems it can cause, such as pain, infections, anemia, and stroke. But many people are able to have a very good quality of life by learning to manage the disease.
According to Dr. Amos Oyoko, the DMOH for Bungoma district, the District hospital gets about five patients with sickle cell every month which means the this year the hospital has around 40 sickle cell patients since January.
 The disease is becoming more and more persistent in Kenya as many children are being diagnosed at birth. The country has scarcity or no experienced doctors to deal with the condition and this has made it hard for sicklers (those with sickle cell) to manage it on their own.
It is worse that the disease is not known by many people as it comes as a myth to some parents as they have no idea what it is. This keeps on getting ghastly as there is no centre for sicklers in the area or even in the country.
For Joy Watitwa, she has to travel to Eldoret every week or whenever she has an attack to see her doctor for checkups. Joy was diagnosed when she was 2 months old and life has always been a struggle for her through the painful crisis and frequent transfusions.
The question on most sicklers’ minds is what is the government doing about the condition? When it comes to diabetes there are drugs to manage it, HIV has its consignment of meds every day, Cancer? The government included money to buy cancer machines in the budget.

A medical diagram showing sickle cell anemia. [Photo/Courtsey]

Michael Okiru, also a sickler from Myanga said he left school at class 7 because it got hard to manage schooling with the frequent attacks he got daily. Sometimes he could attend class for only one week in a whole term. He also has had to live with a leg pain since then which has never subsided.
Michael put off the rumors’ that sicklers never live past their teen as he is now 24 years old. Although he tells some doctors that they should have a better way of explaining the condition to patients.
Michael says he was diagnosed at around 5 years and the doctors said he will not have long to live, words which he can never forget, as he now says he is living proof that that’s just a baseless allege.
When asked if he fears dying, Michael says, that is never out of a sicklers mind as they fear that every crisis might be their last.
Sicklers pay exorbitant bills to buy their medicines which are rarely found in the country. Joy reveals that she gets her Hydroxyurea (a management drug) from even outside the country and they go for about Sh. 50 for one pill and one has to take them daily.
Sickle cell management drugs are very scarce even with the urgency that a sickler needs it all through or when in a crisis. It is time the government makes an effort to equip the medical facilities with enough drugs to sustain the affected population.
Dr. Oyoko says that it is hard to manage sickle cell in Bungoma particularly with very little staff that is adequately acquainted with the disease. The government needs to encourage capacity building for medical officers so that they are taught how to handle the disease.
The condition is has no specialized doctors because many opt to work instead of getting a post graduate degree and then specialize in the disease. There are also no clinical sessions for the condition so patients are seen alongside other patients with other diseases as cancer, or diabetes in some hospitals.
Michael says that he once went to a clinical check up where there were other patients with other diseases and he was mistaken for a diabetic and told to check for blood sugar instead of doing a blood count because the doctors assumed all patients were diabetics.
There should also be more support groups for people with the condition so they can help each other get through life. Joy urged all the sicklers in Bungoma to come together as it’s always good to know someone really understands how you feel.
There is no cure for sickle cell other than bone marrow transplant in infants which is a risk as most sicklers tend to reject the transplants. The only prevention is management by taking drugs and avoiding strenuous exercises.

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