It all began in 1984 and following the birth of my second child, my son Lee born in April when I was 21 years of age. I had no known health problems when I had my daughter who was born in 1981.
Life had been perfect and at last I had my own family was complete. Having helped with the care of my nephews for six years, I was well prepared for motherhood and I embraced it wholeheartedly. It had always been my dream, like many young girls, to meet a husband, get married and begin a family, I counted myself very fortunate to have been able to fulfill my dream so quickly. For any Mother to experience that instant feeling of love when they embrace their new born child for the first time, it has to be absolutely the best and most accomplished feeling of euphoria that we can ever have in our lifetime. Followed by the wonderful change of lifestyle that this little one brings, this new being that becomes the soul of our universe, the most important thing in our lives. I adapted very well to my new job of being a Mum to my children, those years were the best of my life.
I returned to work when my son was just four weeks old, not only was this difficult with a baby who didn't sleep during the night, but I began to have joint pain in my arms which the midwife put down to a difficult birth. I suffered great tiredness but I thought this to be a combination of caring for a young baby and a toddler and maybe returning to work a little too soon?
When he was a few months old, I was unable to lift my baby from his cot and would have to crawl on my hands and knees to even get there. The joint pain was terrific, it resulted in a visit to the Doctor who prescribed me with aspirin, the aim was to reduce any inflamation which was the cause of the pain and stiffness. I felt drained and tired and it was hard to cope with those young children, running a home and having a husband to look after as well.
The medication worked for a while but the relief was short lived, by October and six months later, I was rushed in to hospital with internal bleeding and bruises all over my body, I had no energy and needed to sleep for long hours. Blood tests showed a very low platelet count and this followed many tests at the hospital.
At first they suspected Leukemia, but after a lumber puncture and samples of bone marrow, this proved negative much to my relief. It was unclear what was wrong and once recovered I was refered to a Consultant rheumatologist who suspected something quite rare and worrying due to my young age. He then referred me to a Professor at Hope Hospital in Manchester who was a specialist in the field of Rheumatic Disease and auto immune disorders.
It was early in 1985 when I was diagnosed with Scleroderma, a form of Systemic Sclerosis, quickly followed by an overlap of Lupus (SLE). There was no treatment at that time as it was still a rare disease, the only thing available to me was a high dose of Immuno suppressants (steroids) aimed at slowing down the progression.
I found an article in a newspaper of a young girl who had developed the same conditon and who had died just eighteen months after diagnosis. ( I still have this today) I took this with me for my next appointment with the Proff and asked him if I was going to die? His reply was that he couldn't guarantee anything at this stage and that the next two years were critical to my chances of survival.
My perfect happy life was completely torn apart, my chances of surviving this were small, it all depended on how my system responded to the treatment. All I could think of was my two small and beautiful children growing up without their Mother. I had been handed a death sentence, I could not imagine being given worse news than this and just twenty one years old.