On Tuesday 22nd November 2016 I started a journey that I thought on many days would never happened. I started my weekly infusion of elosulfase alfa, or as it’s known by it’s marketing name, Vimizim.
After years of campaigning across the UK and here in the north of Ireland, the drug was approved and I was given a second chance to ‘give it a go’ at life.
So myself, my parents and my brother made the journey to the Northern Ireland Clinicial Research Facility (NICRF) based at Belfast City Hospital to start the treatment for the first time. I was full of excitement for the big day, but there was a great fear there too.
- What would the treatment be like?
- Would it hurt me?
- Would there be any side effects?
- How would the weekly infusions affect my life?
- Most importantly of all – would it work?
This is my story. This is to say thank you to everyone who supported me in my campaign. the MPS Society UK, the politicians, the media, my friends, my family, people who signed my petition, people who stared my story to create awareness.
The staffs at NICRF were excellent and extremely friendly, making us feel at home and welcoming us into the family they created at the facility. It certainly made us feel relaxed and the other Morquio families who were there to get Vimizim.
Vimizim is administrated by an infusion, which drip-feeds the drug into our blood. The whole process from start to finish usually takes up to 5 hours and is relatively painless. A little prick or sting in the arm, which only lasts a few seconds. Easy peasy, lemon squeezy. The worst part for me was the pre-infusion medication we had for the first 6 months of treatment. It completely zoned me out and left me groggy for the rest of the day. The way I saw it, it was a small price to pay for a big prize.
In the last 12 months, I only had a reaction 3 times and they were quite scary, especially the first time. That was mostly down to the unexpectancy of the reaction and not knowing what was happening to my body and if it was serious. To put your mind at ease, it was never serious. My body would start to get cold and I would start to shake from the coldness, unable to stop. This was caused by outside factors such as colds that didn’t show on me. So if it happens a 4th time, I’ll be ready. RAWR!
In February 2017, I was able to get the weekly infusions done at home, where a nurse would come and give me the treatment and monitor the progress. I always look forward to seeing the nurse each week and catch up on the weekly gossip and banter.
At the start, my wee dog Mirta wasn’t sure what was happening to me and kept a close eye on me and more importantly to her, kept a close on the nurse to make sure she was not hurting me. Here were are now 10 months later in mid-November and Mirta knows the craic. Every Friday she is waiting for me to turn up in the morning, she gets her little toy and follows me into the sofa, where she spends the day with me. She is much more relaxed around the nurse now and looks forward to the visit.
So the big question everyone asks, does Vimizim work, did the campaign make a difference to my life?
The short answer to that is a resounding Yes! It made a huge impact to me and everyone who is on Vimizim have to told me that they have noticed differences to them too that has been magnificent.
Before Vimizim, I had a lot of respiratory problems, which felt getting quite breathless easily, my energy levels dropped quickly, which led me becoming unfocused a lot and losing motivation in the work I do. I was also prone to infections and would have to take prolonged periods off work each year when it hit my chest.
Now days my breathing has improved greatly and I don’t find myself finding it as difficult as I once had. I have more energy now, which means my focus has increased greatly. This is reflected in the work I do, as the quality has increased and so has my motivation to do the work.
After starting Vimizim, I noticed small, gradual changes within 3 weeks. Little changes and those changes built and built as the weeks clocked up. People would approach me and compliment me on the way I looked, the change in my general attitude to things and more of the stuff I can do.
Now this is no miracle cure or all fix all of my problems, but I feel I have control of my life again and can live it in the way I want. There are still a lot of successions I have to still make for my disability, but I’m happy to make them.
I did experiment recently by increasing my working hours for a little while. I found that it was still too tiring for me to do so and I may not be able to do so in the future, but those hours I do work, they are more productive. Plus, when needs be, I can work the odd extra hours or days for a short period, if the situation calls. Just not too much.
In recent weeks, I had a lot of extra work on and it did affect me. I was a lot more exhausted and let’s be honest, irritable than I would normally be. It was an important learning curve for me. Life is better and yes I can do more, but not too push myself too much and take on too much. It affected me not only physically, but my mental well being too.
Whilst this is fantastic and a great marker for me this week, it has also had a sad side too. Whilst in the middle of writing this very blog, I learnt from the Irish MPS Society, that the HSE in the south of Ireland has said NO to Vimizim this week. This is devastating news to learn and I am both heart broken and angry for my friends and neighbours that they will be denied the same opportunities as we did have up in the north.
I have been talking about the benefits to everyone in Ireland this year about how great Vimizim and wrote letters to Irish TDs to show them that this treatment works and it’s important that everyone gets it.
Two young girls, Grace Cogan from Co. Monaghan and Cezara Focsa from Co. Kilkenny, were on the trail in Ireland and both had Vimizim stopped last year.
I help Grace and her family campaign against HSE and the Government to get this decision over-turned. I got a twitter campaign going through The Late Late Show during the year and we got #getgraceonthelatelateshow trending in Ireland through the show. We attached #latelateshow to the tweets and filled the timeline with information about Grace, Morquio and Vimizim. Lots of people were reading this and the brought nationwide awareness. A few days later, I did a talk for Rare Disease Day in February and I brought Grace’s story to the international stage. Later that week, the HSE reverse their decision on Grace and she is now on Vimizim.
Sadly, Cezara and everyone else in Ireland with Morquio, were kept in limbo and had no access to Vimizim.
With the news I learnt tonight, I am calling on the HSE again to approve funding for Vimizim. I am calling for the Irish Government to look at this again and give the Irish Vimizim.
What is little known, but I have spoken about before. There are only two countries in the world that manufacture Vimizim. One is the United States of America and the other is Ireland. Yes Ireland. Ireland benefits from having the drug manufactures financially yet are refusing to pass these benefits onto the citizens of Ireland to benefit from it.
Time for Vimizim to be an all Ireland drug, time for Ireland to approve funding for Vimizim, it’s time for people with rare diseases in Ireland to be made welcome at home. #Vimizim4Ireland