How did I get ET?

I was told by my old doctor that it was his hypothesis that ET was related to people who live in prolonged, high stress lifestyles. He said that when people are stressed their platelet count naturally raises. When your body is constantly stressed and therefore increasing platelet production over a length of time the cells mutate, resulting in ET.

It would be interesting if there is any research on this. I would love to know how I got this and if it could have been prevented.

27 Replies

  • Think the straight answer is "no-one knows " but the hypotheses I have heard are high levels of stress and/or radiation, perhaps linked to an underlying predisposition. I certainly had several periods of extreme stress....

  • Thats a difficult one, there could be so many factors. I suppose until they learn more about the condition, we will never have a definitive reason. The stress theory makes sense, but then so do many others. Could it just be just one of those things that went wrong and its the luck of the draw!!

  • Cheers for posting the vid ET - Very interesting. Ive always thought many cancers have an environmental or chemical basis. I was a painter/decorator for a number of years leading up to my PMF diagnosis. Exposure to benzene / toulene is highlighted as a possible cause. I worked with chemical based products every day as many do who do not go on to develop cancers, so maybe I was susceptible in some way. I doubt I will ever know for sure.

  • I forgot to say, before one of you comedians does, you can see the effect it all had on me by my photo.

  • Why do you think I don't show you my photo!! I do wonder about the effects of stress but wonder about environmental or chemical triggers. You see folk smoking for years, like my late mum and eating all the fat and cream and living to 88, my dad lived to 92! They had a stressful time in the war but lived in the country, ate lots of fish, were breathing in good air - it makes you wonder.

  • I don't believe that. My daughter is 5 with et, jak2 +. Her haem recently got her heel prick/guthrie card tested. Turns out she was jak2+ at birth, which means she was during pregnancy. I think she's the first reported

  • That's interesting. Was Jak2 recorded on the Guthrie test or did they have to do another test ?

  • There is no rhyme nor reason to this is there!!, I was going to throw smoking into the pot as I smoked cigarettes from 16 yrs to 40 yrs and I am sure there is as many chemicals in that as coal ash, but your post threw me kentuckyrain, so back to the drawing board? best wishes

  • Hi,

    I was told that it could be radiation, a virus or poisoning to the body of some kind.

    Not sure I was specifically stressed when I became ill, but it might had started 8-9 years earlier...Although I didn't think I ever was really stressed. One thing I wonder about is, does your doctor try to find out why you have got it?


  • I too had a stressful lifestyle but I do find the post by kentuckyrain interesting. I have two brothers and two sisters, all above average height, I am below. I was part of a survey when I was a child which showed that the enamel on my teeth was softer than it should have been. I have always had less stamina than my brothers and sisters and struggled to keep up physicallly and despite regular dental care have always had bleeding gums. (no more now since treatment for PV). I, along with one of my sisters developed a pituitary adenoma as a young woman (treated successfully). I have always worked full-time in the past and have been fortunate never to have been unemployed and assumed a reasonably moderate lifestyle but fatigue has always been there and often right from the moment I woke up and vigorous exercise has always made me feel worse. I have a gut instinct that I have had the mutation for much of my life as I have had the symptoms most of my life. I don't know why although both in my job and my life I have had much stress. Both parents were in the RAF during the war and for my formative years I lived in an area where there were several discharging factories and a coal gas works. I don't really think the will is there to find causes as it potentially could open several cans of worms. I am grateful that I am responding to treatment but worry about the long-terms effects of cyto-toxic drugs. I don't even have grandchildren yet! Ce'st la vie. Love and kindness to you all.

  • I've just watched the video ETphonehome. Its very interesting and places in the US where people who have lived most of their lives would seem the best indicators of likely causes. The phenomenon of genetically unrelated people acquiring pv with the factors in common being the area they have lived in most of their lives, I would think, is pretty damning evidence. In the UK people move around quite a bit during their lives and therefore it is difficult to identify clusters. Perhaps a questionnaire on residential history etc to be filled in on diagnosis and donated to a dedicated research facility would shed a bit more light on the causes for people in the UK (if the will was there). There is always the fear in the UK of uncovering a scandal followed by compensation claims and because of this feedback from sufferers is not sought.

  • Hi Val_P

    This question and issue of cause is currently being looked at for a potential research study. There is no conclusive evidence according to the experts and MPD Voice are funding an epidemiology study. The May 2012 issue of MPDlife gives more details. There will be another update soon but have a look. It may help with some of your questions

  • It may be coincidence, but I'm pretty sure my ET started after I had Glandular Fever as a teenager, which is known to cause a wide variety of after effects. Anyone else had that?

  • Angie1 - yes I had Glandular Fever in my early 20s, then diagnosed with ET some 20 years later.

  • Hello, Yes, I had glandular fever when I was about...22 I think. A long hard period with really severe symptoms.Diagnosed with E.T 30 odd years later...

  • I have ET and believe that the cause of this was as an instructor at the UK's Fire Service College where I worked in the Hazmats section. We burnt oil under pressure to simulate incidents at petrochemical sites and wore no breathing apparatus while leading the teams in to firefight. Benzene is an obvious by product of this burn and within the US there is an accepted link to AML, MFF and ET, unfortunately the UK courts will not accept this. Radiation is also a possible linked cause but despite the lack of H&S in evidence at the time I worked there in the late 1990's I am just coming up against a brick wall, I only wish there was some expert in the UK who could prove the causal link!

  • All I know is I have PV for at least 5 years, my grandfather had Mylenoma, my cousin has MDS, and my brother has Factor V. I think there are many factors causing these diseases.

  • I have had ET since August 2010. During the previous 2 years my husband's mental illness became increasingly worse and culminated in him being hospitalised for 3 months early 2010. This time was particularly stressful but whether this caused my ET to develop goodness knows. I dare say someone in the next few years will come up with an answer to your question. Hope your treatment is working well for you.

  • It has been so interesting to hear all of your opinions and personal stories. It makes me realise that I'm not the only one searching for answers. What a huge task the researchers have, and how valuable websites such as these are. Thank you

  • as Florence1961 has said, there is currently an epidemiology study being undertaken in Belfast and Southampton which is looking into the causes of MPDs, we are hopeful that it will tell us all why, we will keep you updated with the results. Maz.

  • I'm new to the group,and I am so interested in the responses I read here,about MPDS.I have posted a rather long introductory entry on the home page,and my argument is that the exposure to Agent Orange while I was in Viet-Nam is the reason I eventually came down with it(ET)The stress idea is intriguing and that was the first time I had ever heard that.Also it appears that many of the comments come from the UK area?....I live and have all my life,in the U.S.A............Please keep in touch as this is def. a great site to learn from and to exchange and comfort,as well.Thanks everybody and GOD bless.

  • Hi I developed ET 6 years ago (unbeknown to me at the time) and that was when I went through a very stressfull time with a knee reconstruction and loosing my partner, 2 kids and house.

  • I am thinking of two factors in my life. As a child in the 1970s, I had really awful hay fever, and we lived downwind of the hay field next to us. I wondered about the link to pesticides. My hay fever slowly cleared up when I left home at 18. Also, when I received my diagnosis, I had just finished a complicated house move and stressful improvements to the new house. So stress might have been the catalyst but pesticides the underlying cause maybe?

  • Lots of interesting theories on here! I'd never heard about the glandular fever one before. I had it - aged 17. As a kid I was never ill, beyond occasional coughs and colds. My sister had the whole range of childhood diseases - chicken pox, mumps etc. My ET diagnosis was made when I was 39, although I have no doubt I had had it for some years before that. The stress theory really makes most sense to me, high stress job, marriage breakdown through my 30s, culminating in separation and divorce in my mid 30s. On top of those two theories I have to add that we lived near a landfill site for the 4 years before my diagnosis..... But that would not correlate with the length of time I'd had symptoms. I'm really hoping pollution is not the cause because my two kids would have been exposed to it too. :-(

  • 4 years on, I wonder if anyone is closer to an answer to the cause. The stress theory interests me because something has been bugging me and I think I should get it off my chest. My husband who has PV and Jak2 is and always has been a serious nail-biter. I mean, he really gnaws his fingers constantly. Last year we attended a patient forum and when we walked in to the room where people were sitting I saw a woman gnawing her nails in exactly the way my husband does. Ok, now you're thinking I'm crazy, but I just can't shake off the idea that somehow people might be accessing poisons from their hands/breaking into the bloodstream by penetrating the skin around the finger tips/something to do with teeth??? Etc etc. I just had a gut feeling about it so now I can't stand seeing my husband chewing his nails as I have a fear that it might be contributing.....Of course the nail-biting could just be caused by stress, which comes with any serious illness. Or it could be my own anxiety turning into paranoia! What do people think?

  • Hi I have asked the stress question too. Everything I read indicates that stress is bad across the board, it just isn't a state our bodies are meant to live in constantly. Do I think it causes our condition I think it makes it harder for our bodies to thrive and possibly makes it easier for problems to take hold..Yes.

    I have made quite a few subtle adjustments in my life and find that in general this reduces my stress levels.. although there is so much you can't control.. I still have bad periods where I just can't switch off.. not usually about MPNS, it's just living life..

    I recently looked at a list of emotions and asked what was missing, and for me it was joy.. I drive myself hard.. so...solution? A date with my hubby!

    Hope you find your answers..

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