|For many, living with an incurable disease may mean the end of the world, but for Dominique Friend, a sickle cell disease patient, it is an opportunity to be a voice for those in her condtion.|
Seeing Dominique Friend, one would assume that all is well with this beautiful and ever smiling mother, because sickle cell disease (SCD) is an invisible one, meaning the damage the disease causes is rarely reflected in the outward appearance.
Sharing her life experience as a sickle cell disease patient, she said, “My life has truly been interrupted as a result of this dreadful disease. The chief complaint of Sickle Cell is pain. Because of the severe pain, it’s hard for me to function as a normal person.”
“The pain affects my ability to do simple things like cook dinner on a regular basis or attend football games with my son or other family activities, because I get tired easily. I have trouble standing for long periods of time. Every day is a challenge to keep up with my life’s activities. Basic simple activities like going shopping with my daughter or doing a load of laundry can be so draining for me.”
“I’m sure you all can’t imagine living a life in pain every single day. Consequently, there is a lack of awareness of how severely the disease affects those with SCD and a lack of understanding of the excruciating pain that accompanies a crisis and the overall fatigue and weakness that are the continual companion of those with SCD. Unfortunately, this lack of awareness can extend to health care practitioners as well.
“I was once denied pain relief all night long because a nurse ignored my insistence that the medication pump wasn’t working; she thought that I was seeking more medicine because I wanted a high!
“After experiencing many more issues like this one, being stigmatized as a drug seeker, often judged by how I looked and made to feel like my pain wasn’t real, in talking with many other SCD patients I found I was not alone in this struggle.
“Though my pain, the darkest time of my life, a time I felt like death was literally knocking at my door, my purpose appeared, and my memoir, Sickle: A Personal Story of Pain, Purpose and Perseverance was birthed.
According to her, the book ‘Sickle’ was written to serve as an encouragement to other SCD patients as well as a tool to educate the medical community from the patient’s perspective, adding “ Learning to advocate for myself taught me to teach others that they are their own best advocates, because we know our bodies better than anyone. The lack of education and understanding of this disease has caused thousands of patients to die prematurely.”
However, in a recent development, Head of the sickle cell unit of the Jos University Teaching Hospital, JUTH, Dr Silvanus Okpe,, said about 3.4 million Nigerians are currently suffering from sickle cell anaemia while about 40 million Nigerians carry the gene of reproducing sickle cell patients.
According to him, “the burden of sickle cell anaemia is enormous. About 30 per cent of out-patients, who visit this hospital daily, live with this sickness while a lot of children die of the illness daily”.
In conclusion, there is need to educate the masses about the disease and for those already infected, they can still live out their purpose in life like Dominique Friend and so many others are doing it today.