The President of Association of People Living with Sickle Cell Disorder, Mrs Aisha Maureen Edward has said that not less than 170 registered members living with the disorder have died in three years.
Edward said several others have also died in Enugu, Ebonyi, Abia and Imo, and that the number in Anambra was only for duly registered members, as some other unregistered members have passed on, unnoticed.
Briefing journalists in Awka yesterday, she regretted that sickle cell patients were being discriminated against in the area of jobs and other appointments, thereby aggravating their plight which is already very excruciating.
“Most sickle cell patients are endowed academically, mentally and otherwise, and if given the opportunity will do well in several areas of endeavour, and I am using this opportunity to call for people to look their way.
“I am also calling now on government to do the right thing. For me, as a sickle cell patient, I was able to attain this height because I was given opportunity by the Nigerian Army, where I worked for 14 years and rose to become the spokesperson.
“I have carried my campaign to churches and seen that the churches are part of the problem we have. There are not so strict with their order when incompatible couples come to them for marriage.”
She said that the churches will rather rely on Christian s and hope that miracles will happen, rather than averting it by telling the couple the problem they will encounter by giving birth to sickle cell patients if they insist on getting married when certified to be incompatible.
Edward said that 80 percent of the drug addicts in the society were patients of the sickle cell disorder, and that some of them engage in this because they are frustrated by their own family members and abandoned.
She said, “Could you believe that after world sickle cell day, three patients called me secretly and said they would like me to link them up with suicide bombers, because they believe they have been condemned, so they want to also make others feel their pain.
“The pharmacists are also responsible for our plight, they sell painkillers to sickle cell patients, they will rather not tell them about of the addiction aspect of the drugs, but they buy more of the drugs and sell to our people because it is a thriving business.”
She said that sickle cell disorder cannot be cured but can only be managed, and that it was wrong for anyone to accept such. She also called on people to stop using the name of the organization to enrich themselves, after which they procure routine drugs for us which are very cheap.