My Story

With everything in the news about the need for people to donate blood, I would be proud to run for any charity supporting those with blood conditions. 

However, the UK Thalassaemia Society represents a cause that is particularly close to my heart. 

People with thalassaemia produce either no or too little haemoglobin. Haemoglobin is an iron-rich protein in red blood cells. This means that patients must have regular blood transfusions to keep oxygen reaching their organs and keep them alive. 

It doesn't stop there! There's a lot of medication required between transfusions - which present their own challenges - as well as other hidden effects on the body pre and post transfusion throughout patients' lives. 

Unbelieveably, thalassaemia could be reduced or even eliminated with with the right screening programme for families wishing to have children. It is inherited from parents; it is not contagious, or a virus, it is passed on equally by men and women to their offspring. 

It used to be the case that thalassaemia was confined to certain geographic regions. This is because it initially developed as an evolutionary response to malaria; thus, it mainly affected people from malarial regions such as Asia and South East Asia, the Mediterranean, South America, the Caribbean, Northern and Central and the Middle East. However, the number of thalassaemia patients in the UK is on the rise!

It is estimated that 700,000 babies, severely affected by thalassaemia, are born globally each year. Sadly, this underestimates the real number because in many poorer countries, cases are not always reported.

Why UK Thalassaemia Society?

My fiance, Roanna, has thalassaemia. Every three weeks, I see this incredible person find the bravery, strength and intelligence required to pull her through blood transfusions and the uniquely difficult reactions her body has to these. 

Being with her in hospital during transfusions, I have met a remarkable community of patients and medical professionals for whom it is an honour to represent and a privilege to raise money for. 

A remarkable human

Roanna is often called inspirational, by inspiring people! She is truly special, to me - and the world!

Somehow she transforms her painful experience into being the leading advocate for all Thalassaemia patients in the UK and around the world. She dediecates her time to volunteer for the UK Thalassaemia Society in all areas of its work.

Her insight into patients' lived experience of thalassaemia and other blood conditions is unique. I see fellow patients, nurses and doctors heartened by her spirit and look to her for support, companionship, guidance and hope.

I've lost count of how many times she has opened up about her story and been the epitomy of a leader in her field, whether it has been through sitting around tables with hospital directors, capturing the attention of the Health Secretary about inequalities in healthcare or appearing in newspapers and on national and international radio and television.

Why a marathon?

I wish I could share the load with her. But I don't think I will ever be able to understand how hard living with thalassaemia is. For some one who just wants to help, and show her love and kindness, this is really difficult. 

The challenge of a marathon - the internal mental and physical battle - to keep going, step by step, feels like a good way to recognise her experience if only for a few hours. In digging deep to push on, I will be able to look at her and say I've been to my own, far smaller and shorter, version of that hard place.

No finishing line

I wonder what I will be thinking halfway round, when I hit the wall. A longing to see the finishing line I am sure. This reminds me that patients with thalassaemia do not get to ring a bell when their treatment is over. Except for a very few whose bone marrow transplants are successful, or the sliver of hope offered by trials of new gene therapy and editing methods, thalassaemia is for life. 

 They have to keep going - for life! Corinthians 13 says: 'If I speak in the tongues of men or of angels, but do not have love, I am only a resounding gong or a clanging cymbal.' Here there is now cymbal, so it will be my love for Roanna that keeps me running!

What do the UK Thalassaemia Society do?

I hope that any money raised will continue the amazing work of all those at the UKTS working with NHS Blood & Transplant, the thalassaemia screening programme, gene therapy/editing trials and funding approval, improving patient care nationally and for individual cases, supporting parents and educating health professionals about patients' lived experience and mental health. 

As I sit on the ward with Roanna, we may even see a new air glove or vein finder in action thanks to your donations!

Thank you for your donation! Find out more about thalassaemia here: UKTS - UKTS

You can also help by donating blood, getting yourself and your family members checked to see if you or they carry the thalassaemia gene and spread this message far and wide.