The diagnosis

Cheryl was diagnosed with very severe Aplastic Anaemia in 1985 when she was living in Zimbabwe. Her GP sent blood samples for testing when she fell very ill after contracting a cold abroad. The doctor thought she was anaemic and prescribed iron tablets.

During a chance meeting, a medical student friend asked to see her results and thought they didn’t look right. He showed them to a specialist, Terry French, who was able to correctly diagnose Aplastic Anaemia. At the time, very little was known about the condition and, although ALG was available, such procedures were not readily available in Zimbabwe. Terry wanted to send Cheryl to London but, as she was so ill, she went to Cape Town, where she was successfully treated using horse ALG over a three-month period. For Cheryl, the prognosis had been poor and, without medical intervention, Terry advised Cheryl that she would have three months to live.

After successful treatment, Cheryl moved to England in 1987 but when she became pregnant in 1988, the condition returned. She was placed under the care of Professor Ted Gordon-Smith at St George’s hospital in Tooting. Professor Ted, along with a team of senior consultants, attended the birth of her son Stephen, born six weeks premature. At the time, Cheryl and Steve were only the eleventh mother and child to survive when the mother has AA. 

The ties between Cheryl and Prof Ted remain to this day. He is godfather to Steve and was a guest of honour at Steve's wedding in 2017.

AA returns

In 2004, Cheryl contracted cellulitis, which briefly swelled her face up so much that she resembled a hamster. The A&E doctor at Conquest Hospital in Hastings asked if she had any other underlying conditions. She said that she had aplastic anaemia, so he asked if she was due an appointment. When she said "Yes", he said quite clearly, "Make sure you keep that appointment."

That was the first indication I had that this wasn’t just about being anaemic. I knew that Cheryl bruised very easily but still thought little of it, even after the doctor’s warning.

I took her for her scheduled appointment a couple of days later, which included her annual blood test. We waited an age for the post-blood test consultation and Cheryl was very fidgety. We were led into the consultant’s room and I became aware of a distinct atmosphere. Cheryl had known her consultant doctor Judy Beard for about twenty years but she couldn't look her in the face, so Cheryl said simply:

It's back, isn't it?

Those words haunted me for years.

Cheryl's platelets had dropped to six. I don't remember the other numbers but none were good. Dr Beard was amazing, though and told Cheryl that they'd start on a high dosage (360mg) course of Cyclosporin immediately and carry out a bone marrow biopsy the following day.

To say there were tears on the way home was an understatement. She admitted that she had been in denial and that her heavy habit for Diet Coke had disguised the symptoms but she knew from the bruising that she was at risk again. She then had the unenviable duty of informing her family of the news. When her 15-year-old son asked, "Are you going to die?" she could only say, "I don't know." Very hard times.

Things improve 

It took over three years for Cheryl to get back in remission but I am pleased to say that she is still very much with us. She still takes Cyclosporin, albeit on a much lower dose but, fifteen years on, that amazing work by Dr Beard and her team means that I can write this from a positive perspective.

When Cheryl was originally diagnosed, Aplastic Anaemia was almost a complete mystery and even the best haematologists and oncologists were, according to Professor Ted Gordon-Smith, “working in ignorance”.

Things are vastly improved today. Apart from her initial ALG trials, Cheryl has lived with Aplastic Anaemia with only Cyclosporin to keep it under control. She didn't have a bone marrow transplant but, thanks to the work of Professor Ted Gordon-Smith and Doctor Beard, Cheryl is able to live a perfectly normal life, with minimal medical intervention. She works as an area manager for a private care company - a job that brings its own stresses but which is still rewarding. She is testament that having Aplastic Anaemia does not have to rule your life. 

Be well. Be happy.

Blog by Steve, Cheryl's husband