I was born with Beta Thalassaemia Major. My body does not produce enough healthy red blood cells. Thalassaemia Major is managed with regular blood transfusions. I go to hospital every three weeks to get a blood top up. That usually takes the whole working day. I usually go on Fridays, to have the weekend to recover if anything unexpected happens.
Thalassaemia is a hereditary genetic blood disorder. It is considered rare as less than 0.05% of the EU population has it. It is similar to Sickle Cell anaemia, but not quite. The difference is that the red blood cells are not sickle shaped, but not many healthy ones are produced. People with Thalassaemia Major do not get pain crises. The only noticeable side effect is a paler or slightly yellow skin colour. People with TM nowadays lead long healthy and happy lives. A lot of them are married and have children.
From the blood transfusions I get extra ferric iron (Fe3) which the body does not have a mechanism to excrete. In order to protect the internal organs from the excess ferric iron, I follow a chelation treatment with a water dispersible tablet after my two main meals. I also take a few other medications in the morning when I wake up.
Thalassaemia is very well managed, and people with Thalassaemia do not usually get many medical emergencies. They may feel more tired than able-bodied people though.
People with Thalassaemia are quite resilient as they had to live and manage such a complex medical condition from a very young age.
If you live or work with someone with Thalassaemia, please talk to them as to what their needs are and ask them to tell you how they experience their condition.
I recently received an email from a friend forwarding on a request to write a blog article about my experience as a teenager. The email invited us to answer questions. The first was: Tell us about a time when you were a teenager, ‘that you felt the love’, felt connected or close to your parents.
My immediate reaction was, I don’t think I did. The next thing that came into my mind was my father playing with us on Christmas eve, the cakes and the delicious food my mum used to cook for our birthdays. But that was when I was a child. As a teenager I can’t recall that much. Could it be that I only remember the more difficult emotions, the pain and not the fun and the love?
Continue reading My experience as a teenager
I remember when I was in NYC a couple of years ago, we needed to exchange some greyhound tickets to ones with a more suitable time as our plans had changed. Not being familiar with how things work in the US we were worried we may be stuck with some tickets that didn’t suit our revised schedule.
We hoped that it would not be too difficult to have them exchanged and decided to try our luck at the ticket office. We approached the lady at the ticket booth, a middle-aged black woman who looked very youthful and content in what I thought an unusual setting for someone to look content. Her impressively polished nails caught my attention as my friend approached her and asked if it was possible to change the times on our tickets. The lady looked up with a look that conveyed a sense of contempt and compassion at the same time before she spoke. ‘Honey, nothing is impossible!’ she announced in an assertive but reassuring tone. I immediately felt a smile dawn on my previously concerned face, not sure if it was due to the fact we could change the time on our tickets or because of this lady’s contagious optimism.
Continue reading The Artist’s Way Chapter 5: Recovering a sense of possibility