Maybe I am being a little forward in writing this at the end of November, but Christmas will soon be upon us and time disappears fast.
Since my first post in June, I have spent the majority of my time planning and enjoying my wedding day. This was the culmination of a four year love story, which started on the internet, and almost straight away featured the conversation about HTLV-1. Lets just say that very early on in the relationship I knew my now husband was a keeper, as he had the goodness to see past the initial stigma of a sexually-transmitted virus, and see the person behind the diagnosis. It hasn't been an easy road, with wobbles from both of us as to how my virus could affect us and our life together, but we have made a lifelong vow, "in sickness and in health" and all that! The photograph shows me with my new husband, alongside the creator of this website, and my HTLV consultant, who kindly attended the evening reception to help us celebrate our memorable day. The next discussion is on starting a family, but I want to enjoy married life for a little first, and fully understand the issues surrounding HTLV transmission to our child before we take the plunge.
Before our wedding, I had another small but important breakthrough, and that was securing life and critical illness insurance. As a new home-owner, it seemed a sensible thing to do, to put in place a safeguard against financial worries, if the worst happened. What I didn't anticipate was a struggle that took 16 months to overcome. I am happy to name and shame Aviva PLC, who refused me insurance despite direct contact and assurances from HTLV specialist healthcare professionals, they just stopped returning our calls and letters. I would like to heap praise, however, on Chris Morgan, of Unusual Risks, who brokered my deal with Zurich, after months of information gathering and negotiation. I am paying a premium due to my virus, but at least I have a policy in place. Its was just another fight I never expected to have, being a non-smoker, non-drinker, with a healthy lifestyle and otherwise very low risk score.
We are gearing up for our first patient forum of 2015, that will be on Friday January 16th at St Marys Hospital, and hopefully patients will shortly receive a letter containing all the details. I am trying to round up attendees from other clinics around the country, but some people do not want to think about the virus beyond their yearly check-up, and that is completely understandable. If you are interested, please ask your consultant or HTLV nurse for details! Rare Disease Day 2015 falls shortly after that, on February 28th, and once again we hope to have an information stand in York Hospital, which will be on February 27th to make sure we capture a working day. Lets hope other clinics do the same, and we can raise awareness of our virus. Together, we are not rare.