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Emmanuel’s Story

Living with Sickle Cell Disease, Emmanuel’s story of this recessively inherited condition unfolds.

My parents were informed of my condition after the first few months after my birth in 1968. I became aware of Sickle Cell somewhere between the ages of 7 and 10 years. I remember being told about my condition from my parents to the best of their knowledge, which was then later endorsed by my doctor during a hospital admission. To my recollection, I experienced a crisis in my joints where I was in excruciating pain and temporarily losing the use of my legs. The information was given verbally and in terms of being adequate, it was sufficient to the degree of my comprehension at the time but in hindsight there could have been a lot more literature available for me to read to hand.

The experiences with the NHS have been varied over the years. This all depended upon the demographics of where I was hospitalised and taking my age and maturity into consideration. Geographically, the BME population in the area of the hospital had a major bearing on my treatment. There have been mountain top and valley experiences. Whilst being in a suburban hospital, the concept of me being in chronic and acute pain seemed incredulous to hospital staff who had a perfunctory approach to my care. In my mid teens where I was a little more knowledgeable about my pain, I was admitted to a more centralised hospital where the treatment was remarkably better but still had some desirable improvements to be made.

At times when I had pains in my limbs, it had been trivialised as opposed to someone who had a visible disability. There were repeated occasions whereby pain had been chronic, acute and excruciating which caused me to feel nauseous but medical staff would insist to give me a regime of medication which they thought best as opposed to accepting my knowledge about my condition and medication that I was au fait with. This tended to be quite an obstacle in terms of hospital admissions.

In my opinion and more so my experience, ways of improving the system would be to have some training encompassed in the medical staff years of study particularly front line staff such as Nurses, GPs, Health Visitors and the like. This would make indelible steps to enhancing services for the service user and accommodating reciprocal benefits at the point of interface between service user and professional. 

Finally I must stress that my faith as a Christian has played an integral part in my life. However, depending on the mindset, ambition, focus, also pain, a person can achieve within reason whatever they set their mind to achieve with immeasurable success.

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