Ilaitia Usa Tukana comes from Fiji in the Western Pacific. He grew up playing rugby in a family with two brothers and two sisters. Having studied software engineering at the University of the South Pacific in Suva, he now works at the Central Bank of Fiji. At the age of 8 years old, Ilaitia was diagnosed with rheumatic heart disease (RHD). We recently spoke to Ilaitia about this diagnosis, and why he now advocates for greater awareness about the dangers of sore throat and RHD.
 
How did you find out that you had RHD?
At the age of 8 I got a sore throat. At the time awareness of RHD was not high – it was a new disease in Fiji, and I didn’t know anyone with RHD. We were not aware of the symptoms or how severe it would be. In Fiji it is normal to always give a Panadol if you have a sore throat.

The pain died away but then it came back when I was in class 6, aged twelve years old. My bones and joints were all locked up. I was not able to stretch my hand or even lift it up, and it was the same for my knees and ankles. My family took me to hospital where I was diagnosed with RHD.
 
Did your diagnosis interfere with your studies at school?
No – I began to have injections of benzathine penicillin G, or benza, every three weeks. I felt well, and wasn’t held back by RHD.

When did you discover that you needed surgery?
One Saturday, after I came home from a rugby match, I received a call from the Australian Rheumatic Heart Team at the clinic where I was receiving my BPG injections. The doctors said ‘we have news for you. Looking at your heart right now and its condition, you most probably have 1-2 years to live unless you have surgery’.

The news came as a complete shock. I asked them: ‘How can you tell me to go through surgery?’ I was feeling fine, I’d been playing rugby as normal, and my health and schooling were not affected at all. ‘Can you please check and restart your machines, I still can’t believe that I have to go for surgery.’ But the bacteria had damaged my heart valves.

I told them ‘promise me my heart is going to better’. The doctors promised, and so on Monday, two days after the call, I was admitted for an operation for valve replacement surgery.

It was one hell of an experience going in there. They told me afterwards that while I was unconscious in the recovery room, the monitors began to beep frantically and I was wheeled back into the operating room for further checks.

Were your friends and family all aware of your diagnosis and surgery?
No – in my first and second years of university none of my friends knew that I had RHD. I thought that if they knew that I suffered from RHD and had been diagnosed then they would go easy on me, or if we were in the gym they’d say ‘you shouldn’t lift that much – you have RHD’.

So I kept it in the dark for so long. Finally, I decided that I needed to step out from the dark to tell people that I suffer from this. Everyone treated me just the same as before. So I managed to break through the barrier – I took part in the standing up for RHD campaign in 2014.

Is there a higher level of awareness of RHD now among Fijians?
Yes – it has gone up in recent years, and there are a lot of activities. I’m really happy about all the work that is ongoing – we are visiting centres, holding seminars, putting up posters, and training nurses.  We are also organizing a fun run and will have a booth at Hibiscus Festival – we call it the Mother of all Festivals – to raise awareness about RHD.
  
We are also helping to build a patients’ group to provide counselling, support and advice. It started as a small group in 2004, but we are building up the number of activities. Both people who are taking injections or who have had surgery take part. Older people can give advice to the younger ones – this shows the importance of making sure you take your medication.
 
From the people who were admitted to the same ward in the hospital, all have passed away - I am the only one still living  This is why adhering to medication is extremely important – I take my medication daily and still have BPG injections every 3 weeks, but people do not always do this.
 
What do you tell people to encourage them to keep taking their medications? 
For those who take warfarin, I try to explain what it does to your body. It is important to keep taking it to keep your blood thin but at the right level: otherwise if your blood is too thick, it will clot in the artificial valve, but if it is too thin then if you get a cut then you will carry on bleeding without your blood clotting.
 
For adherence you have to enlighten your family members. They must know the importance of this. Your lives depend on each other, with my mother and my brothers, so in a we all work together on this. They often call me up in the evening to tell me to take my medication.

For example, my little nephew will run up to me at 9pm shouting ‘Uncle! Uncle! Your life!’ I can then give him a reward for reminding me, and it becomes something that we look forward to! 

For more information on BPG and taking warfarin, please visit the RHD Action website. There you can find lots of resources to support you or a family member to live with RHD and reduce the risk of complications.