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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.
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We felt that too many patients with HTLV and their relatives, too many clinicians and scientists did not know what HTLV was. We felt that everybody has the right to quick, accurate and easily accessible information online, but especially people who are suffering with HTLV and those who care for them.
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