In the winter of 2019 I had been referred to the orthopaedic surgeon for knee replacement surgery. Having seen the consultant I was put on the waiting list and to my pleasant surprise received a letter within two months giving me a date for my surgery. At my pre assessment I was told they wouldn’t be able to go ahead with surgery as my haemoglobin was very low and that they will have to refer me to the haematologist for further investigation.

At this point I thought I may have been anaemic and that some iron tablets might bring my Hb up to normal. I felt fine and had no symptoms of any sort at all. Three months later my Hb went down further and the haematologist arranged for me to have a bone marrow biopsy.

When the result was to hand, the consultant gave me the news that I had a blood disorder called MDS with excess blasts and gave me a booklet which explained all about the disease. Imagine my shock at the diagnosis!

I had not heard about MDS nor had any member of my family. It was so rare that nobody I knew had heard of it. I come from a South Asian country and my family back in India hadn’t heard of MDS at all. I asked both my siblings to get checked. My brother immediately had a blood test and was diagnosed with Hairy Cell Leukaemia. He has since been treated and is doing well. My sister fortunately is ok.

I was told at the hospital that if I didn’t have any treatment this disease would progress to Leukaemia. I decided to get it treated but there was yet another shock when I was told that there was no cure for this disease and that I would need to have chemotherapy for the rest of my life.

To add to my troubles I caught Covid within a few days of my diagnosis by which time the Covid had become a pandemic. Both the illnesses made me very depressed. I started losing weight and had become anti-social, not wanting to talk to any friends who called and I would just let the phone ring and go to answering machine.

Looking on Google to find more information on MDS my husband came across the MDS Support Group and suggested I join. I started reading about this disorder on their website and finding out that there were many like me who had been given this diagnosis and how they coped, helped me to slowly come out of my shell and to see life in a different perspective. The help and support of the MDS Support Group together with the regional Zoom meetings have been very useful in understanding this disease.

Surekha Kodical

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