_

Patient Story

Susie Michael

Tell us a little about yourself?

I am a 60 year old British born Cypriot living with thalassaemia major. I was born in Islington hospital and have stayed in North London for the majority of my life, living in Hendon, Whetstone and East Barnet. My interests are keeping fit by going for daily walks around my park and going to the gym where I partake in yoga, Pilates and Zumba dancing classes. Exercise is very important to me as it helps keep me strong and flexible, preventing my osteoporosis from getting worse.

What makes me happy is socialising with friends, going out for meals, theatre and travelling. Though currently, these are things I am unable to do which is something I am finding quite difficult.

I have a small immediate family who I am very close with. I make sure to speak to my parents most days as they are in Cyprus and are unable to come over and visit. I can lean on my children or sister for support, they have always helped me during the times thalassaemia has challenged me. I truly appreciate having them there when I need them most and I know they wouldn’t want it any other way.

How did you find school/university/work and so on?

Primary and secondary school were difficult periods of my life. I often struggled keeping up with the lessons as I had to go to the hospital for my transfusions. Being the only student with thalassaemia, it wasn’t long until the teasing started. Being pre iron chelation meant that my skin looked grey, which resulted in name calling. I tried to laugh it off, but it definitely knocked my confidence. I became weary and selective with whom I spent my time with. Growing up I felt more like myself when I was with other people with thalassaemia.

Although I do not have any particular positive memories of school, a personal achievement of mine was leaving collage with a distinction and merits in business studies. Having really struggled to stay on top of my education, this was a way for me to close that chapter of my life on a positive note.

I started my first job at the UKTS, and I am proud to say I was their first secretary! I stayed with the team for over a year until I moved to another office and admin job. I gained a lot of experience and met some lovely people, some I still keep in touch with today.

When I was 23, I decided to live and work in Cyprus. I stayed there for 4 years as I absolutely loved their way of life. Looking back, this was a period of my life where I really developed my independence and confidence. I got a job as a rep which allowed me to have so many hilarious experiences with the friends I met out there. It was a tough job which required lots of hours standing but I persisted through no matter how tired I was.

Unlike the reliability of getting blood in the UK, having transfusions in Cyprus was a little more complex. In the 80’s, Cyprus had a shortage of blood which meant that I would have to ring the hospital on the day of the transfusion to make sure they had enough blood for me. Sometimes, I was only able to receive one unit. I would also have my blood postponed as they simply didn’t have enough for me. Normally, I would have my treatment while it was siesta and then go back to work. My boss knew I had thalassaemia, but I didn’t want it to interfere with my ability to work so ensured I proved myself as ‘normal’.

Tell us about your diagnosis – was it a shock to your parents or did they know they were carriers?

I was born heathy and chubby weighing 5 lbs and 6 oz. I was only when I was three and a half years old my parents began to become concerned at my reoccurring and persistent cough and cold. It was only when they took me to get examined by the GP they were told I had thalassaemia major. It was then apparent the cough and colds were due to my enlarged spleen that severely lowered my immune system. Unable to walk, I had my spleen removed which was when I had my first transfusion. The doctors informed my parents that I had been surviving off my foetal blood up until that point. My parents married in the 60’s and had never heard of thalassaemia, it must’ve really been a shock to find out I had it. I know it was an awful time for them.

At what age did you start taking responsibility for your chelation medication?

My chelation started at 17 years old, I remember my ferritin was dangerously high at 17,000. Dr Hussein from the Royal Free had to show me how to put the butterfly needle in my stomach and the angle it had to go in. Mixing all the desferal bottles with saline solution was a pain because it took at least 20 minutes every day to prepare. You can imagine at 17 and just wanting to go out to the clubs with friends, this was something you didn’t want to do when you got home!

The desferal pump was heavy and made a ticking noise that always seemed to be extra loud when I was trying to sleep. I have always been the one to do my chelation as I never wanted my parents to feel as though it was their responsibility. That was many moons ago, now I take three Exjade tablets and that’s it, no fuss. I receive my transfusions every three weeks having two or three units depending on my Hb levels, as well as annual check-ups for my heart, bones and liver. Being the first generation with thalassaemia, I think I haven’t done too bad. Nurses Niamh, Emma Prescott, Shirley, Sandy, Michelle, Rommel, Dr Emma Drasar and Dr Shah have always been so involved in my journey with thalassaemia. They have constantly been there to help me through tough times and I know I can depend on them no matter what.

Do you have any other health issues, bone pain, diabetes etc? If you do, please tell us about these and what treatment you receive for them.

Due to my osteoporosis, I have badly injured myself from relatively minor accidents. As of recent, simply walking on a concrete pavement caused a hairline fracture on my hip which made me fall and fully break it, this resulted in me having a part hip replacement. I found this physically and mentally difficult as I find relaxation from exercise. In the past I have been offered spine surgery which I declined as I deal with my pain with pain medication which seems to work for now. The thought of having rods and pins in my spine fills me with worry and stress. I do not want to go through the extensive recovery process unless I desperately need to.

Any interesting / funny stories from your life that might interest our readers?

I remember while on my honeymoon, the hotel hosted day time activities, one in particular was wrapping our partner in as much toilet roll as possible to turn them into mummies. I knew from the hours I have spent watching the nurses wrap up bandages around our hands and arms to protect our cannula I was going to win. Unsurprisingly, we came first!

Any other aspirations in life – plans for your future? (e.g., travel, parenthood)

In the future, I hope to move to the coast somewhere in the UK or in Cyprus as I love being by the sea. I may even get a dog to accompany me on my daily long walks.

With regards to my thalassaemia, I really hope to see more options available for the younger generation so they do not have to go through everything I have endured. I believe strongly in new advances like gene therapy to free others from this condition and have great confidence there is light at the end of the tunnel.

Anything else you might want to say that hasn’t been covered?

I would like to say to our readers to never allow thalassaemia to prevent you from achieving what you want in this lifetime. No matter how difficult it might feel to reach. For me, I dreamt of having children. When I got married in 1991, my husband and I decided to try and start a family straight away. I knew it was going to be a rocky ride, but I did not anticipate how emotionally exhausting it was going to be. In the early 90’s it was difficult to find fertility clinics that specialise in ovulation induction. This treatment was designed for people like me who could not have natural ovulation due to iron overload. I knew IVF wasn’t what I needed and rather a course of treatment which stimulated my pituitary gland. Initially, I had three ovulation induction treatments at the Royal Free Hospital which were unsuccessful. I then had six more treatments at the Whittington Hospital where I tragically miscarried three times. During these years I faced giving up a countless amount of times, coming close to accepting I wasn’t destined to be a mother. This was a time in my life where I can honestly say I resented having thalassaemia. I promised myself on my ninth attempt that I could no longer put my husband and I through another disappointment. Miraculously, on my final treatment I fell pregnant. Overjoyed at the thought of finally having a child, you can only imagine my utter shock when I found out I was having twins. I guess the treatment worked a little too well! In 1999, I gave birth to a girl and a boy and I am truly blessed. They are now 21 and have just graduated from university. It took me eight years and three miscarriages to finally have my children and I am so relieved I did not give up on them.