At the age of 18 Donna Akuffo was diagnosed with Lupus. Donna’s primary condition SLE, (Lupus), is incurable and can only be managed with medication and diet. Her secondary conditions of Chronic Renal Failure (CRF) and Coronary Heart Disease (CHD), and CRF are a direct result of Lupus. As such, a kidney transplant for Donna represents a form of treatment and not a cure…

Unsurprisingly, given the severity of her condition and her relatively tender age at diagnosis, Donna initially struggled to comprehend her condition and accept the resultant changes it made to her life.

                “As I had never any experience of being ill I was a typical teenage patient… not taking my medication as prescribed… sometimes not taking it all! I felt different to my peers and I didn’t want to be different!”

One of the most significant traumas Donna went through in the early years was her sudden weight gain due to being prescribed steroids. The effects had not been fully explained to her. Her body image changed dramatically and rapidly; from a svelte size 8 to a size 16 in 2 months.

Around the time of her diagnosis Donna met her husband-to-be Jerry. Together they have weathered the arising problems of: multiple miscarriages, Donna’s weight gain, and her periods of depression. It took 2-3 years for Donna to accept that her condition was not going away, and with Jerry’s support she realised she had to learn about her condition and gain as much information as possible… just  to stay alive.

Some 6 years into her treatment Donna suffered the devastating blow of kidney failure, which required emergency dialysis in order for her to live. From then, for 3 days a week, for 3 hour periods each time, Donna had to be linked to a dialysis machine; the purpose of which was to clean her blood, in other words perform the function that her kidneys used to do.

Again this was quite a learning curve but Donna adjusted to the thrice-weekly dialysis appointments and the lifestyle changes well. However, it was still fraught with disappointments “Weekends were terrible, you never knew which of your friends would die… friends were made and lost easily on the Renal Dialysis ward, you just got used to it.”

In October 1998 a suitable donor match for Donna had been found and her ‘holy grail’ of a kidney transplant operation could occur. For Donna, a new kidney represented the chance to rekindle her life; unfortunately, soon after the transplant operation Donna experienced complications. On her return home from hospital she had to face the knowledge that the transplant was not a complete success. However on her frequent trips to her GP surgery Donna came across an Expert Patient Programme that she credits with being a key turning point in her life and helping her to combat the ailment of depression. This undoubtedly helped her cope with possibility that her transplant was failing.

Donna has now been back on thrice-weekly dialysis for 48 months and was pleasantly surprised by how quickly her body readjusted to this.

During her often difficult journey, Donna became aware of the vital work of the ACLT (African Caribbean Leukaemia Trust) and was drawn to the charity as she saw how they were advocates for and supportive of young people suffering with life-limiting conditions. Furthermore, Donna wished to be involved in a movement that encourages BME (Black, Mixed Ethnicities) to make it a personal priority to be on the organ donor register which can and does save as well as change lives for the better.

People can make a difference by registering on the NHS Organ Donor Register and informing their family of their wishes. Please visit organdonation.nhs.uk or call 0300 123 23 23 and quote code 2209.

TO JOIN THE ORGAN REGISTER CLICK HERE