Raj Singh, 40
Husband, father and housing officer
Living with an invisible condition/ thalassaemia major.
Tell me about yourself – how would friends describe you?
I am a 40 year old husband and father who has thalassaemia major. I live in Bristol and am booked in at the main hospital every two weeks for my transfusions. I work for a charity that supports young people facing homelessness in Bristol, with my role specifically focusing on finding affordable accommodation for them. Proudly married for nineteen years, I look forward to celebrating my twentieth year anniversary next March. I’d say my friends would describe me as approachable, helpful and fingers crossed, a valued person to be around. I am fairly religious and enjoy going to the temple when I can. In my spare time, being a avid football fan, I follow the games closely, especially when Arsenal is playing as they are my favourite team.
What is your heritage?
I am British Indian. My father was a first generation British Indian ,born in London, and my mother was born in India. Their story is quite romantic as they met during one of his visits to India and she joined him in London once they were married. Neither of them had heard about thalassaemia before.
Describe your family (siblings etc).
I have a large extended family with over a hundred first cousins. It surprises me that I am the only one with thalassaemia major. Even when I go to the Sikh temple with approximately five hundred people there, I am still the only one with the condition.
My son is seven years old and is beginning to understand his dad has to go into the hospital frequently. He accompanies me to the hospital for my cross match and we both look forward to these appointments as we love spending time with each other and tend to treat ourselves afterwards with a fun activity. I love playing with him and although he recognises and respects that there are some days when I am unable to and that I need rest.
What makes you happy? Sad?
I am an optimist who always sees the glass half full rather than empty. I know that whatever happens in my life with thalassaemia, there will always be somebody worse off than me. I try to enjoy my life despite the hand I have been dealt, ensuring I play each card carefully and to the best of my abilities. I am just thankful I am here to experience my son growing up.
Going to conferences and meeting and speaking to the older people with thalassaemia has helped to reassure me and has provided me with the motivation to keep up with my treatment as I hope to remain healthy and live long enough to see my son marry and start his own family. What is also fantastic to experience is being amongst the other younger patients at the events with their own children, reconfirming that people with thalassaemia can fulfil these life goals.
Tell us about your diagnosis – was it a shock to your parents or did they know they were carriers?
I was diagnosed shortly after my first birthday. This diagnosis came as a shock to my parents as it was the first time they were introduced to the word thalassaemia, especially since my two older sisters appeared healthy. Once I was diagnosed, they then discovered that my two older sisters, like my parents, also inherited the trait as did my two younger brothers when they came around. This meant that I was the only one in my family with thalassaemia major.
My first memory of going to the hospital was when I was about six or seven year old. Those memories were not happy ones as transfusions were arranged overnight which meant I was l was dropped off by myself each time. This was something I found very stressful and upsetting and although the nurses tried their best to calm me down each time, it still did not help me as I just did not want to be there. It was also upsetting that my dad would continuously promise that he would pick me up as early as possible, but still managed to turn up late each time because he had gone to the pub the night before. This is something I still remember to this day which goes to show how frustrated and desperate I was to get out of there.
Nowadays, how often do you have appointments, at which hospital, which doctor do you see?
Up until age fourteen I was treated at Bristol’s children’s hospital. I was then transferred to the a haematology and oncology department in the main adult hospital. Presently, I receive transfusions every two weeks and my haemoglobin and ferritin levels are monitored by the Clinical nurse specialist for thalassaemia and sickle cell religiously. I must say, I really appreciate how they take on board what I say and value my opinion. The open communication I have with the specialist team has really helped immensely.
I am aware that there are about twenty five people with thalassaemia major being treated in the Bristol hospitals, but I only manage to see two or three others as our transfusions are mostly booked on different days. Whenever we meet, I take the opportunity to speak with anyone being transfused as its always interesting hearing about the other services which could be beneficial to me.
At what age did you start taking responsibility for your chelation medication?
I began mixing my desferal medication at the age of fifteen and since then, I have always been on top of my chelation and additional medications. I was unable to inject myself until I was eighteen but have a strict regimen which ensures that I comply without fail.
What treatment do you receive in the UK?
In addition to receiving transfusions every two weeks, I take Exjade tablets daily and desferal infusions six days a week. As well as this, I have a number of other medications which are prescribed for secondary issues for most people with thalassaemia . I also make sure to control my diet as I am diabetic and I want to prolong having to rely on insulin, this has meant I have not eaten sugary foods since I was fifteen. I also have to go for regular check-ups, MRI scans every six months to observe and regulate the iron in my heart and liver, bone density scans for my osteoporosis and of course monitoring of my hearing and eyesight which is known to be affected by the regular use of desferal.
What was it like at school – were you the only child with thalassaemia?
Though I was the only student with thalassaemia, I did not have any issues with school. The teachers were all aware so I felt comfortable talking about it. My transfusions were strategically arranged to ensure I did not miss out on my education. My appointments for my crossmatch were normally made after school hours and have my transfusions were booked in for Friday afternoons. I was extremely fortunate in that, aside from my transfusions, I never had extended stays in the hospital. As a result, I was able to fully integrate into my class and experience school like any other child.
How much time do you need to take off for transfusions?
At the moment I do not require taking any time off as I work on a part time basis. Similarly to my school days, my transfusions are booked in on Friday afternoons. I am also fortunate in that my supervisors at work are very understanding, especially as they took the time to research and understand what it means to have a condition like thalassaemia is and how it affects me. they are extremely flexible with me, especially during the periods when I struggle or have medical appointments.
My job as a housing officer is quite satisfying being able to help others. Working for a homeless association in Bristol housing,. I am grateful I can support those people who are threatened by homelessness and make a real change in other people’s lives. Like many other people with thalassaemia, I take pride in my ability to work and support my family.
What are your hopes and plans for the future?
My main goal for the future is to make sure my wife and son are financially secure and safe with a roof over their head. Being able to visit new places is also something we hope to do , the first place on our list would be to New York as its on our bucket list.
What are your thoughts on the upcoming therapies?
In terms of gene therapy I think in the future it could be a promising treatment option for us all. I think that as it’s still a relatively new option for us more research needs to be done to ensure that it is safe. For me personally, I am quite excited about the possibility of having an injection extending or possibly replacing a blood transfusion, now wouldn’t that be great?
What advice would you give to other young people who have thalassaemia?
One way of coping is to talk more. If you have something you need to say make sure say it. You must remember you’re not alone. Communicate your fears, no matter your circumstances. It is so good speaking to other people to get different perspectives. Don’t hold it in your heart. Some have found that the biggest problem can disappear after sharing it with someone else. Encourage others to speak about their experiences and spend some time listening to older generation speak about their own life experiences. Get rid of the stigma.