June saw me attending an event halfway around the world, visiting the beautiful island of Martinique, and speaking in front of over 100 people. All because of HTLV-1. I guess you could say its a perk of the job!
At our HTLV Forum in January, we were made aware of the upcoming 17th International Conference on Human Retrovirology: HTLV and related viruses, being held in Martinique. We were asked if, as a patient support group, we wanted to send a representative, as there would be the opportunity to speak on behalf of UK patients. Several patients expressed an interest, and I was chosen to represent the UK and the HTLV Patient Forum. From that point on I started to work out what I wanted to speak about, and how I was going to fund my trip! I am eternally grateful to Professor Graham Taylor, as he facilitated charity funding for my flights, transport and accommodation, which left me funding a much smaller portion of the overall cost. I had everything booked and triple-checked by April and that left me watching the calendar until my adventure started on June 15th.
All was going well on that date, or it was until I got as far as the first local train. Before I had left my home county, my connecting train to Europe had been cancelled, and I was required to rebook and play a seat lottery. After this small hiccup, the rest of the outward journey went smoothly, as I crossed from the UK to France, to then catch my flight to Martinique. I have never had the opportunity to visit the Caribbean before, so I looked upon this trip as a grand adventure.
Wow Martinique was hot. Hot and humid, as the conference was scheduled for the start of the rainy season. I left the airport grinning like a child as I saw palm trees and banana plantations for the first time. The hotel garden was a riot of tropical colour, with flowers that we in the UK would struggle to cultivate as indoor plants, flourishing and growing to huge sizes in the tropical climate. I had found my corner of paradise.
So, I thought I should probably polish off my presentation for the conference. I had collected words of support from fellow patients, and statistics on the UK HTLV state of affairs. I was shocked to learn that of the 600 or so people known to be carrying HTLV-1, only 50% of those, or around 300, actually attend their medical appointments every year. This is reflected as the numbers increase, perhaps 90 new diagnoses occur every year, and only 45 patients go on to routine appointments. This saddens me greatly. I would love to speak with the patients who disappear from the clinics, and find out why they do not attend their appointments. Perhaps then the support offered to them could be tailored so that they do feel able to attend and be cared for by the wonderful team of clinicians who run the service. That's a quest for another day perhaps, along with the introduction of pre-natal screening so mothers can be better informed before they give birth, if they are HTLV-1 carriers.
The first morning of the conference arrived. I was running on the strong black coffee supplied by the organisers, and a healthy dose of adrenalin at the thought of speaking to all these professionals who had flown to Martinique from all four corners of the globe. Would I be a disappointment? Would they sit there yawning and checking their emails whilst I mumbled my way through my slides? On the contrary, I was received warmly by a room full of attentive and supportive individuals, who reached out to me as the human aspect of their research and experiments. I think it was just the right thing to do on the first morning of the conference, give people a reminder, that beyond the laboratories and microscopes, there are real people living with the infection. I spoke for perhaps twenty minutes, as at the end of my presentation there were questions from delegates interested to know my take on the UK's screening procedures, and how I saw the interaction between different countries, in terms of patient contact and support. The whole experience was positive and almost overwhelming, as I suddenly found myself among 150 friends, and people who understood my disease and wanted to help. I was a little wimpish and shed a few tears after I had spoken, mainly brought on by the relief at finding such a positive response to my presentation, and perhaps the jetlag. I listened to the other patient representative, who came from Brazil, and her story detailed the generation now dealing with HTLV-1, and the struggles they have funding care for new mothers, and those suffering with HAM/TSP and ATL. I count myself lucky to have the NHS behind me.
With my presentation over, I set out to relax, and absorb as much of the conference as I could. I allowed myself some time to sleep and eat well, and enjoyed the warmth that we just do not get in the UK. I attended most of the conference sessions, understanding little or none of some presentations, and having a little more knowledge where the experiments concerned human-sized results. What I did understand though, is that quietly, all around the world, lots of people are working to find a cure for HTLV-1, and HAM/TSP, ATL. Perhaps in my lifetime we will have drugs that can stop the virus in its tracks. Perhaps we will develop a treatment that will not mean ATL is a terminal cancer. Perhaps we will see HAM/TSP slowed so that the inevitable loss of mobility is no longer on the horizon. Whatever the future holds, the prognosis is positive.
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.
I have been encouraged to start writing a blog by my wonderful doctor, as being a carrier of HTLV-1 can be a lonely journey, and there can be no better way to cure that loneliness than the thought that others may read this and share a moment of empathy, sympathy or any other emotion, I have been through them all!
So, I will keep my first offering short and sweet. I was diagnosed four years ago, and I am currently an asymptomatic carrier. If you have a look elsewhere on this website that phrase will be explained, but to sum it up it means I am fairly healthy, the HTLV-1 virus is not causing me any issues. Hopefully I will remain unaffected by the virus, but knowledge is power and I spend a lot of time reading up and researching HTLV-1, so I am prepared for any changes that could be related to HAM/TSP or ATLL. This included attending a recent conference in Rome, as a patient, to see what the HTLV European Research Network are doing, and to be a visible representation of what a patient looks like, hopefully to focus people's minds as to the human element of their biological research. The picture below shows me with Dr Fabiola Martin and Professor Graham Taylor, who facilitated my visit.
I don't think there's much more to say right now, other than a big thank you to the creator of the website for the effort put in to the information provided. If this had been available when I was diagnosed it would have saved a lot of anxiety for me and my family.
Together, we are not rare.