HTLV stands for Human T cell Lymphotrophic virus. It is a retrovirus that infects a type of white blood cell called a T-cell or T-lymphocyte. HTLV-1 can be passed on through infected fluids, including blood, semen and breast milk. It can cause diseases (HAM/TSP – HTLV-I-Associated Myelopathy/Tropical Spastic Paraparesis) which affect the spinal cord, leading to mobility issues, and also ATLL, which is a form of cancer.
Knowledge is power
I was diagnosed five years ago, and I am currently an asymptomatic carrier – 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 conference in Rome, as a patient, to see what the HTLV European Research Network is 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. Up to 1 in 20 carriers are thought to develop cancer as a result of HTLV-1 but this usually occurs only after several decades of infection.
See the person behind the diagnosis
My wedding in October 2014 was the culmination of a four year love story, which started on the internet, and almost straight away featured the conversation about HTLV-1. Let’s 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 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.
A fight I never expected to have
Shortly 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 paying a premium due to my virus, but at least I have a policy in place. It 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.
HTLV patient representative
I was chosen to represent the UK and the HTLV Patient Forum at the 17th International Conference on ‘Human Retrovirology: HTLV and related viruses’, being held in Martinique.
For my presentation 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 maybe, along with the introduction of pre-natal screening so mothers can be better informed before they give birth, if they are HTLV-1 carriers.
I spoke on the first morning of the conference and 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 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 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. Whatever the future holds, the prognosis is positive.
Mid-30’s, Yorkshire born and bred, working in the Renewable Energy industry. Happily married, with a husband and three cats. Lifelong countryside inhabitant and enthusiast, with a passion for photography.