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New haemophilia treatments

A personal story

Paul

Paul is an Australian community member with haemophilia B

This is a transcript of Paul’s presentation at the 2017 Conference

I have severe haemophilia B – less than 1%.  Until I went on a clinical trial with an extended half life product 5 years ago I would treat on demand - after I had a bleed,  which was once or twice a month.

My main issue with bleeding over the years was that my left ankle became a target joint and deteriorated and needed to be fused.
 
When the clinical trial was suggested I saw it as an opportunity to be involved in helping with the advancement of haemophilia treatment. Also the idea of prophylaxis once a week appealed to me. 
 
Being on prophylaxis for the first time was new for me. I found treating once a week was easy to comply with and get into a routine. Thursday was and still is the day I have my treatment and it’s just a 10 to 15 minute process.

In the 5 years that I have been using the extended half life product I haven't had to treat a bleed. And my dosage has reduced from 6000 units to 4000 units per treatment.

I have peace of mind in my ability to do things without having a bleed. 

I am better able to plan and enjoy life – there is less disruption to my life due to bleeds; also travel has become easier as I don't need to travel with as much product.

My mindset towards haemophilia has changed.  I have a feeling of what it might be like to be normal - so little time is now spent having treatment, or dealing with bleeds.  I have my dose once a week, it takes 10 -15 minutes, and I know I am covered for the week.

It all adds up to a better quality of life.

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