In early June, the #CarersWeek campaign is celebrated annually online to bring awareness to challenges unpaid carers face and to recognise the contribution they make to families. This year’s tagline is 'Make Caring Visible and Valued'.
We want to use this opportunity to capture an insight into life with a rare disease by incorporating self-infusion stories with Carers Week, so we can bring to light both the carer, the treatments and how they’re administered from home. Below are some self-infusion stories from our members.
The Vandepeer family
Hi, we are the Vandepeer family and our son Caleb has MPS II Hunter Syndrome. We are independent infusers of Caleb’s ERT, an import and essential medication called Elaprase which helps with Caleb’s diagnosis of Hunter Syndrome.
Caleb was diagnosed back in 2010, and spent 10 weeks or so having his infusions every week in Great Ormond Street Hospital. After this, we were discharged to home care, which meant we had a nurse come each week to administer Caleb’s ERT.
Once Caleb was well established on this drug Mark and expressed an interest in learning about how to become independent. Our wonderful home care Nurse Jitka, set about getting us trained up.
All in all, it took around 6 months for us to become confident enough to administer, and each week Jitka would leave us for periods sitting in her car outside our house just far enough away that if we needed help, she was there.
Soon enough we were ready to go it alone! And it was the best decision for our family. We have travelled all around Europe and even the USA with Caleb’s enzyme. It’s just a normal part of life for us now and we’ve never looked back. It’s been 11 years - wow! Time sure flies when you are busy fighting a life-limiting disease!
Watch Caleb's self-infusion video below.
The Stevens family
Claire has two boys who both have MPS II Hunters disease. We asked Claire some questions about what their treatment has been like.
How long have you been managing self-infusions from home? It has been a long time, over 10 years since being taught by the nurse. I was left unassisted by the nurse on 28th February 2008 after having three months of training. My first needle-in was on 13th December 2007.
How often is the treatment and how long does it take to administer each time? It is four days between each infusion and it takes roughly three hours to complete the infusion. If you are including numbing cream, it can be up to five hours each time. Every month we receive a delivery to the house from a refrigerated van and store the medication safely.
How did it work before you were taught to administer treatment yourself? We started by visiting Great Ormond Street Hospital every Thursday. It was a long journey and would take up the whole day leaving home at 9:00 am and returning by 6:00 pm. A while later we were transferred to Guildford which was more local to us and this would reduce the time by half. We would normally visit for half the day each time. In the last few months before I was taught myself, we had started receiving home visits by the nurse after school to administer the treatment.
What was the reason for learning and how was the transition? It was a personal reason for me and I have shared this reasoning openly many times in the past at our annual conference and every time it has brought me to tears. I feel strongly towards being an active part and helping where I can because of the knowledge that females are carriers of the affected gene with MPS II and would like to know that I can help my boys now as much as truly possible.
What have been the benefits of being able to manage this yourself from home? There have been so many benefits from being able to manage this from home, the main one is having no set time or any time restraints on day-to-day life and not having to worry about rearranging any bookings with healthcare professionals. It has given us that extra flexibility when arranging family holidays and less pressure in organising for both boys to have treatment. If one was unwell and unable to have an infusion, both boys' infusions would have to be delayed as a nurse wouldn't be able to visit twice, but I can do them on different days. Also, we have the treatment delivered monthly to the house so we have saved massively in cost for travel compared with the past which is another plus.
Has there been much change in routine during the pandemic, change with treatment or did you need any treatment holidays? No, we have not had to change anything during the lockdown.
For more information about Carers Week, click here.