My name is Joshua O’Neil and I was diagnosed with Common Variable Immune Deficiency (CVID) in February 2006 at the age of fourteen. Finding out that you have a life altering immune deficiency is scary at any age especially in your young teens. However, I was lucky enough to have an amazing family unit who supported me through all of my home training and helped me to become independent when doing infusions at home. The team at the John Radcliffe Hospital, Oxford were also excellent.
I attended Swansea University studying American Studies and History from 2010-2014, part of the degree course included an intercalary study abroad year in the United States. Initially I thought what a fantastic opportunity, it will be like living in an American film. However, what was explained to everyone was the need to be well organised and the need to plan! I remember thinking ‘I would love to go, but…’. The word ‘but’ has continued to crop up throughout my life since 2009, initially I would love to go to Swansea University ‘but’ how will I cope living so far away from my family and without the team at the John Radcliffe being so close by, as they have been since I was fourteen?
I quickly settled in Swansea and found a couple of close friends who would sit with me whilst doing my infusion, friends who took an interest in the condition. Worst case scenario if anything was to go wrong I was only three hours away from home! I’d never been to America before and to say I was a little apprehensive is an understatement. I found out in December 2011 that I was attending the University of South Carolina. I immediately told the clinic nurses at the John Radcliff and Dr. Patel who liaised with a specialist in South Carolina, just in case I required any help whilst I was there.
So it came to booking flights, not ordinarily a stressful experience, however, trying to find an airline, which would take my blood product (Baxter Subcuvia) on board, whilst having to be refrigerated during transport, proved to be difficult. After many expensive calls to America I was set on flying with Delta Airlines, who allowed the product to be refrigerated on board. I also purchased a second bag of luggage to transport my needles and other essential products. Whilst still in the UK I liaised with my study abroad co-ordinator in South Carolina who allowed me to purchase a mini fridge – like the majority of American things this fridge was not mini for just $25. That was the transport and storage of my blood products whilst living in University halls sorted. When I arrived I went to the university clinic to pick up a sharps container, the nurses there were lovely and it was never a problem dropping off a container and picking up a new one!
I did an infusion just before I travelled to America, so that I had an extra couple of days to get to know people who I knew would be alien to my condition. However I couldn’t have asked for three better housemates. All three were more than happy to sit with me whilst watching a film or just ‘chilling out’. They never judged and were willing to go the extra mile to help me with any aspect of my condition and settling into American life, and without them the experience of doing infusions in America would definitely have not been so easy.
Got a story about your experience of living with an immune deficiency? Please get in touch as we’d love to share it on our website and with our community.