Jayden’s Life Before And After Hemlibra

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hemlibra, the life changing treatment for haemophilia - A

For the first time in 15 years I have been able to enjoy a normal life & experience things that kids my age do.

Jayden

A few highlights

  • SELF INJECTIONS JUST ONCE A WEEK
  • NO MORE BRUISING AND PAIN
  • NO INTERNAL BLEEDS, AT ALL
  • ABLE TO WALK LONGER DISTANCES
  • NO WHEELCHAIR REQUIRED
  • A MORE PREDICTABLE LIFESTYLE
  • NO MORE HOSPITAL ADMISSIONS
  • RECORD SCHOOL ATTENDANCE
  • BEST EVER SCHOOL RESULTS
  • DROVE A CAR ON THE RACE TRACK
  • GOT MY LEARNER'S LICENSE
  • LESS STRESS FOR MY CARERS

The story of how my life has completely changed....

From living most days in hospital …

To being able to live a fulfilling life …

.... no urgent hospital visits, no wheelchair and injections only once a week

It’s been 2 years since starting the study trial of Roche’s new drug Hemlibra, and life since then has changed so much it’s almost unreal.

 

The first 14 years of my life had followed a regular, routine pattern, very different from any other kid. Every day or 2nd day, I would get an infusion. Then sometime later, I would get some sort of bleeding internally. Another infusion, or two, or three, or many more, would stop the bleeding, and life would return to normal… for about two weeks. Then the whole process would begin again. 

 

What exactly is happening here? That daily / bi-daily infusion is a preventative dose of Factor VIII. That internal bleeding could be either a simple bruise, a more painful joint bleed, or a very serious organ or brain bleed. Those many infusions after is the treatment of even more Factor VIII. This whole process is the result of my bleeding disorder, Haemophilia, and the absence of the essential clotting protein, Factor VIII, to clot my blood.

Life Before - hospitals, hospitals and more hospitals.

I was diagnosed with Severe Haemophilia A when I was six weeks old; Haemphilia A for a deficiency in Factor VIII, and Severe for having less than 1% present in my bloodstream. It is a life-long bleeding disorder, and without this essential clotting protein, any bleeding that occurs doesn’t stop; it keeps on going, and going, and going. Solution? Inject more Factor VIII to clot the blood and stop the bleeding. Simple right? If only my immune system thought the same thing. 

Throughout my life, I have had many significant bleeds that would put me in the hospital for weeks and months on end, right from the moment I was born. With so many bleeds happening so often, the amount of Factor VIII being administered had led my immune system to believe that it was a foreign body that, strangely, did not belong in the bloodstream. Hence the development of inhibitors; an antibody created by an immune response to the injection of the synthetically produced clotting protein. With inhibitors, any amount of Factor VIII injected would be neutralised to varying extents, making the treatment to help clot the blood less effective. 

Over the years, this would create numerous problems. Not only did it make the treatment of my haemophilia generally more difficult, the sensitivity of the inhibitor would vary throughout my life. Through age 3 to 10, the inhibitor simply increased the required demand of factor for it to be effective. After 2013 however, my immune system would act to completely eliminate any trace of factor in my body, rending my main clotting agent to be completely useless. With this ‘high titre’ inhibitor, the only way to manage any bleeds was with FEIBA (Factor Eight Inhibitor Bypass Activity) or with NovoSeven’s Factor VII, but neither could make up for the absence of Factor VIII.

During these years, I undertook immunosuppressive therapy with Rituximab, targeting the B cells and halting the havoc of the inhibitor. While it did bring back the effectiveness of the treatment, it did leave me with a weakened immune system and more susceptible to infection and sickness. Worse than that, however, was that this immunosuppressive therapy would turn out to be only effective for a year at a time, bringing back an even stronger and more aggressive inhibitor, and thus even less effective treatment each time.

Life After - living a normal childhood for the first time ever.

In early 2018, after 5 years of 5 consecutive inhibitor relapses, Roche accepted me to start a study trial with their new drug called Hemlibra. While doing the same job as Factor VIII, the way it is injected then formed in the body is completely different. This means that while my immune system has developed a response to Factor VIII, it does not to the presence of Hemlibra, meaning this new drug can work to the best of it’s abilities without the inhibitor.

Hemlibra lasts longer

This is not it’s only advantage over traditional treatments. Hemlibra can last in the body for up to 4 weeks, while recombinant (synthetic) factor will only last a few hours in the case of Severe Haemophilia.

Hemlibra is easier to inject

Also while Factor VIII needs to be injected via the veins (venipuncture), Hemlibra only needs to be injected into fat or skin tissue (subcutaneous).

Watch how I used to administer my Factor VIII and how I administer Hemlibra now:

Hemlibra’s effect was nearly instant

The moment I was started on the drug, the change was instant. While the start of the trial didn’t mean I would be completely covered for bleeds when they did happen, it did prevent a lot of spontaneous and low-impact bleeds that would have occurred. Once a month had passed without a single bleed, we knew that this drug had been the thing we’d been waiting for, and the next two years of the trial would allow me to achieve some incredible things.

The first big difference was the lack of bleeds in my leg muscles and joints. Bleeds in these places used to be common and would leave me sore in the legs and usually bound to a wheelchair temporarily. While the wheels were pretty fun, it did restrict me from many other fun activities, including my favourite pastime of simracing! 

My first full year without a wheelchair

2018 would be my first full year free from a wheelchair, giving me more freedom on the school grounds and a lot more time to drive on the home sim rig. Less bleeds in the legs also meant more physical activity, allowing me to walk longer and further than ever before, participate in more PDPHE lessons than I ever thought I could, and even complete a semester of weight fitness training at school.

I could start to catch a bus all by myself, and we could finally take long trips from home and the hospital when I learned to self-administer my Hemlibra, allowing mum to go on a long overdue holiday. Best of all, this new found freedom gave me the opportunity for many sleepovers at my friend’s places for many weeks without any bleeding issues.

My first taste of motorsport

2018 would also host 2 of my very first outings into the world of motorsport. March 16th saw me act as co-driver in the Lotus of my mum’s partner, Paul, at Round 5 of the Whiteline Rally Sprint. A point to point timed run, my job of co-driver was to ensure that Paul could take each corner of the course with as much knowledge and clarity as possible, such as corner severity, road conditions, road positioning and so on. This was a truly fantastic event to take part in to learn the running of a rally event and the variety of cars that could participate, from a normal Toyota Yaris all the way to a proper WRC Fiesta.

My first ever drive in a car & on the race track

October 8th 2018 was the most exciting experience of the year, where I got my first chance to turn the wheel of a car in the Riccardo’s Racers programme held at the Sydney Motorsport Park. Organised by Motorsport Australia (Known at the time as the Confederation of Australian Motor Sport, or CAMS). The day involved both the Level 1 and 2 courses, both of which I took part in. Level 1 focused on basic car control techniques such as accelerating, braking, maneuvering and collision avoidance, while Level 2 taught more advanced techniques of car dynamics and handling. With the guidance of the instructors, I was able to successfully complete both levels of the program, and by October 4th 2019, I was completing Level 3 of the course at Luddenham Raceway and on the track! Thanks to Motorsport Australia for providing such a good course to take part in and for helping my initiation into the world of motorsport!

My best ever results & attendance at school

The trial of Hemlibra also helped me massively in regards to my education, where I’ve been able to achieve some of my best school attendances and yearly results ever. Year 9 saw me acquire 2 awards for excellence in Information Software & Technology and Elective History, while in Year 10, I came 1st in History and 2nd in Commerce, plus 3 achievement awards in English, Science and Geography!

My first taste of working life

Having access to Hemlibra also enabled me to go onto my favourite school experience during the drug trial, work experience. Here I was able to join the force at Simply Sports Cars to learn about the operations of a Lotus and KTM dealership and the teamwork involved in a working environment amongst race engineers.

At SSC, I was able to work and learn in almost all areas of the dealership, including the workshop, parts room, engineering and design room and much more. From helping change brake pads, to rebuilding engine heads and packing induction kits, my two weeks at SSC was eye-opening and a truly amazing experience, and one which taught me a lot about the mechanical workings of cars and the running of a sports car dealership. Big thanks to Simply Sports Cars for providing me the best work experience possible!

 

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No more bleeds & hospital. Hemlibra is my HOPE for a brighter future

With everything that’s happened in the previous two years, what was the most amazing thing was the significant reduction of any bleeds or hospital admissions in the whole two years I’ve been on the trial.

With Hemlibra, any kind of internal bleeding that I may experience can be managed and healed quicker than ever before. Better yet, Hemlibra completely prevents bleeds from happening, so any sort of tiny bump that used to have me to bruise up yields nothing, and even big impacts that I’ve experienced only cause a small amount of swelling.

It’s this main difference that has allowed me to do all of these things for the past two years, and now moving into 2020 and the end of the trial, my success story has been more the reason why Roche will continue my access to this life-changing drug. So the sincerest of thanks to Roche for changing my life for the better. I truly hope I can bring good things to this world for the future.

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