A patient's perspective (HTLV)

You are not alone.....

9/6/2014

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.

9 Comments

Fabiola Martin

9/6/2014 08:44:06 am

Thank you very much for starting the first English HTLV patient blog I know of. And thank you for making the effort to come to HERN 2014 in Rome. It was a fantastic conference indeed and I must say I was much reassured by new developments in HTLV vaccine research and CCR4 blockers for ATLL patients.

Also I thank you for making additional time to go through the patient questionnaire with me. I promise to complete is as soon as possible and to launch it once I have established the best evaluation methodology and secured funding for a PhD student.
Your feedback was extremely useful and I discussed your comments with the HERN committee at the end of conference.

See you soon.
Fabiola Martin

Sandra Do Valle link

9/6/2014 01:58:41 pm

Oi Kristy!
Meu nome é Sandra Do Valle e sou portadora sintomática do HTLV1-2. Parabéns pelo Blog!
Conheço a Dra. Fabiola e gosto muito dela.
Hoje, aqui no Brasil, demos mais um passo, com vitória, na questão HTLV. O Deputado Federal Jean Wyllys vai apresentar um Projeto de Lei que determine o teste de HTLV na triagem do pré-natal. Já que ainda não temos vacina e nem tratamento, temos que trabalhar na prevenção.
Grande beijo e boa sorte!!!

sevena van zandt

16/6/2014 10:43:49 am

Thank you for making this web site. I was first diagnosed in 1990 with HTLV1 after giving blood. Over the years I have experienced weakness in my legs. I can no longer run or jump. I keep myself very active in walking (I am way slower than other people and have a lazy right leg), riding my bike, circuit training and swimming and yoga for balance. I really do believe staying active has kept me out of a wheelchair so far. I stopped going to the doctor and do not take medication for my symptoms. The whole doctor thing frustrated me. Later on, probably about 2006, I was going to get involved in a clinical trial and when they re tested me they told me had HTLV2. Never confirmed that. My quality of life is decent, just slower than others but I move at my own pace. thank you

Anda

11/10/2014 10:38:38 am

Thank you for this website! It was as informative as it was reassuring - as much as it can be given the high anxiety that comes with finding out that the blood test results came positive… But knowledge IS power and knowledge is what you give people. I also appreciated the kind and thoughtful tone in which you write this information - very important for someone who is freaking out! Please let me know if there are any institutions or doctors in Romania which deal with this virus and if there are any online support groups - I desperately need some of that!
I would very much like to start an awareness campaign here in Romania and perhaps go international - do you have any advice on how to do that? Materials? Guidelines?
Once again, thank you and wishing you good luck in raising awareness and perhaps finding a way to cure this!

Bob

28/2/2015 10:16:37 am

Hi,

I am also from Romania and interested to find out more about our problems. Best wishes.

Sam

23/10/2014 03:19:21 pm

A great blog, can't wait to see additional logs. The site had provided me with information that is digestable and understandable, thank you very much

Betty

5/10/2016 02:58:10 am

I was diagnosed in 2013 after donating blood. I am a carrier but at this time, it is not active. The Dr I went to with my letter from the blood bank had never heard of HTLV. I was then sent to the Center for Contagious Diseases. I was told I had it and what the symptoms were if it became active. I often wonder if and when I will begin having symptoms. I was never told to be retested to see if it had become active. I just sit and wait but I don't think much about it. The only symptom I have is being very tender to the touch. A very light touch to my body feels like a hit. I don't think that's one of the symptoms. Time will tell. Happy to have found this blog.

25/7/2017 02:24:57 am

Your story is identical to mine....Word by word.

Patrice

29/4/2019 06:24:22 pm

I was diagnosed in 2011 and have been living with the symptoms ever since. My life has changed a whole lot, from being active in sports to now walking with canes.

I stop taking the doctors medication and has started self medicating. I have seen some positive results, hopefully I can get the chance to share with other affected patients.

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Kristy's Journey

You are not alone.....

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Hi, I'm Kristy and I have HTLV-1.

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