What is Beta Thalassaemia Major?

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.

Down the rabbit hole

I have been resisting to write. I asked Evelyn last night to write and exchange our experiences by 7pm today and it’s 6:49pm and I’m only just starting to write.

But I feel I don’t want to write about my experience last night. Or I don’t want to write an exhaustive account of events. I feel I want to write what I want to write about last night.

Evelyn and I met to start our research on a particular branch of herbalism.

What stood out for me, is that I was there, on the Southbank, becoming friends with Evelyn, which I thought was an unlikely friendship. And don’t ask me why, I wouldn’t want to attempt to explain why I felt it would be an unlikely friendship. It’s just how I felt.

And it felt amazing to watch us move from being acquaintances to becoming friends.

We compulsively did two full circles of the patch of grass we had been previously lying on. I was well aware we were being compulsive and I was happy to indulge in and explore that. Were we two lunatics walking around in circles or were we challenging the societal expectations of us, to not do circles compulsively around a patch of grass? Kids do that. Kids are allowed to do that. But adults are not. We did it.

I felt surprisingly articulate and that I was still making sense during that state. On the way home, I was able to solve problems better. I felt as if I became smarter. I thought new neural pathways were probably being formed at that time.

I realised what I want to do with my life. I want to write, I want to be a writer but at the same time I don’t want to throw my computer science degree away. I thought I could take inspiration from computer science and right hard science fiction, like Isaac Asimov did. And I also want to write my memoirs. That would really make me feel fulfilled.

I think we have just found the entrance to the rabbit hole and all we have to do now is let us fall down the rabbit hole all the way to wonderland.

– Tom Koukoulis

Evelyn’s account:

My account of last night, like my homework at school, is late.

Having read the first paragraph of Tom’s account, I have decided to pause until I’ve written my own account so the things I’m writing are coming from my own memory.

It’s funny how two people can be from such different backgrounds with such different life experiences and can come together to learn and grow from each other. Spending time with Tom last night, like the wall we circled, is a piece of the journey.

I was fascinated to discover Tom’s pagan/shamanic spirituality, the group of Faeries he is part of, and their desire to spread acceptance and compassion.

We talked about spiritual experiences with the help of certain herbs, and being deliberate in their use for spiritual growth. This was inspiring for me. Although it was something I was interested in, it was inspiring to hear Tom’s experiences and learn how I could take his approach of deciding how I wanted my experience be.

I was completely surprised to discover that Tom is 40. He found looking younger than his age difficult in Greek culture. I hope he is enjoying looking so youthful now.

Tom expressed a worry about whether I had interpreted our time together as something more than friendship, which genuinely surprised me because I had always assume interest on his part, and was aware of my own interest in friendship, not more. There was a moment of awkwardness as I finally realised what he had been trying to say to me, but it passed quickly. And we were talking about something else again.

I was interested to hear how Tom spoke with constant careful consideration for the people he was talking about, the choice of language and awareness of how the listener may feel about what he was saying.

I learned a little about Tom’s family life, the difficulties of being gay/bi in a heteronormative culture and family. It was interesting to learn about Tom’s disability. It was a reminder that not all disabilities are visible. He spoke of the shame attached to it by his parents and how they had let him down with their dishonesty. Tom talked about how books were not considered important in his family, this was before we altered our state of consciousness but in hindsight I can see that there was a lot of breaking out of cultural expectations that Tom has had to do to be honest about who he is.

I was interested in Tom’s dream to do stand up comedy. I loved listening to the way he deconstructed humour and then built the jokes there in front of me. I wasn’t aware there was a science behind the art. I enjoyed listening to Tom’s jokes and was amazed at how he could create them so quickly on the spur of the moment.

I enjoyed spending time with Tom last night and I learned a lot. I am aware of many differences of understanding and philosophical viewpoints but I hope this means I can learn and understand from someone who has such a different life experience and for my life to be enriched by his.

– Evelyn

Urgent appeal for the Nepal Thalassaemia Society

Over the last few days we have all seen the news about the devastating earthquake in Nepal. There are many charity appeals going on at the moment and they are all worthwhile. However there is one charity very close to home and close to my heart and that is the Nepal Thalassaemia Society. It was founded by a British woman, Wendy Pinker, living in Nepal. This lady, who is not a healthcare professional and has no personal connection with thalassaemia, has single-handedly raised enough money to not only open a thalassaemia transfusion clinic in Kathmandu, but to keep it open and running since 2009. The clinic provides free transfusions for over 120 very poor children on a fortnightly basis.

The clinic building has miraculously survived the earthquake, but may need some structural work. However many of the thalassaemia children (who travel many hours to Kathmandu for their transfusions) live in the epicentre of the earthquake and have lost their homes, some are spending the freezing nights in animal sheds with the buffalo, some are in tents and many are in very remote areas. They are in desperate need of our help.  The clinic also urgently needs blood and medical supplies.

Many of us want to donate money to help the earthquake victims; but by donating to the Nepal Thalassaemia Society we can make sure that our donations are going directly to help families affected by thalassaemia. The relief efforts are being coordinated by Wendy Pinker in the UK and Durga Pathak, the President of NTS, in Nepal. Please, if you have a spare couple of pounds, consider sending them to NTS for the benefit of the children – a very little money goes a long way in Nepal and you can be sure that your donations are going directly to those in need with thalassaemia.

Every single penny donated will go directly to the Nepal Thalassaemia Society.

Bank details

Nepal Thalassaemia Society
Account No: 71463209
Sort Code: 40 47 34
IBAN: GB68MIDL40473471463209

Email: pinkyland_2000@yahoo.co.uk

Address for cheques:
Wendy Pinker,
13 Phoenix Way,
Bristol BS20 7FG
Please make cheques payable to Nepal Thalassaemia Society

Email from medicare about the reciprocal health care agreement

“Dear Sir,

Thank you for your email.

The Australian Government has signed Reciprocal Health Care Agreements (RHCA) with the Governments of Sweden, the Netherlands, Finland, Belgium, Northern Ireland, United Kingdom, Malta, Italy, Norway and Slovenia which entitles eligible people to limited subsidised health services for medically necessary treatment while visiting Australia.

An eligible visitor from the United Kingdom (UK) is a person who:

  • was ‘ordinarily resident’ in any part of the territory of the United Kingdom immediately before arriving in Australia and
  • has not entered Australia with the specific intention to obtain medical treatment.

Note: a citizen of the United Kingdom who was not ‘ordinarily resident’ of the United Kingdom immediately before arriving in Australia is not eligible to enrol in Medicare under the RHCA.

The documents required if presenting a current non-British passport are:

  • valid European Health Insurance card bearing the initials ‘UK’ or
  • National Health Service Medical card (Great Britain and the Isle of Man) or
  • Health Service Medical card (Nthn Ireland) or
  • certificate issued by Social Security Committee of the States of Jersey or
  • Proof of Insurance issued by the Guernsey States Insurance Authority or other proof of residence in the Bailiwick of Guernsey.

The above cards required are to support residency. If these cannot be provided, you must provide two or more proof of residency documents from the UK.

Other forms of evidence of a person’s residency in a RHCA country include proof of the following in that country:

  • employment
  • property ownership or rental
  • utility accounts
  • bank accounts
  • vehicle registration
  • children attending school.

Eligible visitors from the United Kingdom (including Jersey, Guernsey, Isle of Man and Northern Ireland) have access to:

  • Medicare benefits for medically necessary out of hospital treatment
  • medically necessary treatment as a public patient in a public hospital
  • medicines available on prescription which are subsidised under the Pharmaceutical Benefits Scheme (PBS), at the general rate.

I trust this information will be of assistance.


Yours sincerely

Christine Simonit
Service Officer, Enquiry Resolution
Health Support & Business Services Division
Provider Services Branch
Australian Government Department of Human Services

Parramatta Smart Centre
130 George St Parramatta 2150
PO box 9822 Sydney 2001

Thalassaemia and sexuality

I remember the frustrations around puberty and coming of age, when I was in high school. We were turning from kids to teenagers. The boys would start growing facial hair and their voices would deepen. The girls would begin developing breasts, menstruating, and shaving their armpits and legs. And everyone was a mess of their raging hormones.

We, guys, were obsessing over who would be next to start growing facial hair. We’d talk about how much each girl’s breasts had grown. We were turning from asexual children to sexual beings.

Continue reading Thalassaemia and sexuality

My experience as a teenager

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

The Artist’s Way Chapter 5: Recovering a sense of possibility

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