vegetarians / vegans

[Karol_Rua]

Hi, I've just had a physiotherapy appointment for nerve damage in my leg (possibly from last bmb). I've never met this physio before and she was most interested in MPNs. She asked was I a vegetarian as most people she has met with blood disorders have been, or are, vegans or vegetarians. I was veggie for c. 6 years prior to my ET diagnosis at 27. Anyone have opinions on that one, considering there is an opinion that vegetarians dont tend to ingest adequate amino acids. . .?

[lizzziep]

Hi, I have ET and have NEVER been a vegetarian!! So probably a coincidence that the ones she has met have been!

Best Wishes

Lizzie

[Karol_Rua in reply to lizzziep]

Thanks Lizzie, I think mutations (in this case JAK2) are caused by a combination of factors and I am just throwing it out there in the hope that this may have been considered as a contributing factor for JAK2 and ET. I wonder has it been researched and statistical analyses undertaken, in combination with other environmental / genetic factors (females are more prone to ET)? I guess its a question for the upcoming conferences. . . Take care!

Karol

[Tigger59]

Hi, I was diagnosed with ET jak2pos, I haven't eaten meat for 25 years, eat lots of fish, pretty healthy diet, never completely vegetarian. So guess I dont think being or been vegetarian affects diagnosis, but interested to see other comments

[Karol_Rua in reply to Tigger59]

Exactly, I'm just curious as it may contribute to our susceptibility, not saying that all vegetarians are prone to ET / JAK2 mutation or that all of us with ET are / were vegetarians - just considering there may be a dietary link. . .

[Aime]

Hi I have PV and definitely not a vegetarian.xx Aime hope physio helps😺

[johoho]

I think the physio may be drawing dangerous and unscientific conclusions from his/her experiences. I have stopped eating meat because of PV as do so many who are diagnosed with a cancer. Its an interesting observation, but thats as far as id go.

[Katyak]

Hi Karol,

I have ET [Jak 2 positive] and I have been a vegetarian for over twenty years. However, I am fairly certain that being a vegetarian has nothing to do with my diagnosis. I was only diagnosed a year ago but in all the reading up I have done I haven't come across any links between the two. I worry, as others have said, that your Physio is making an unscientific assumption based on some coincidences!

Kat

[Karol_Rua]

Hi all, I have to say 'm a little alarmed at the reaction to my previous posting. I, maybe because I am a scientist, like to try and consider the cause (or causes) as to why we are susceptible to mutations and have developed blood cancers. Yes, my physio may have made an assumption (which I have taken very lightly, btw) but I felt it would be merely interesting to throw it out there for the purpose of looking at a random population of people with MPNs to observe if there may be another contributing factor (very unscientifically!) I wouldnt call my physio's observations dangerous - I feel that's somewhat OTT - but was curious to hear another opinion from someone who's met a lot of people with MPNs. Since I wouldn't consider taking any action whatsoever on her opinion, I dont regard it as any way dangerous or worrying - and am a little disappointed / surprised at the reaction my post received.

Are we not here to bounce ideas off each other and try to help one another by support and new ideas?????????????

[Katyak in reply to Karol_Rua]

Karol,

I can't speak for the others who replied but I am sorry that you feel disappointed by the responses. I wholeheartedly agree with you that it is interesting and important to look at any kind of links or information that could shed some light on our conditions. I'm not a scientist but I am someone who likes to try and understand things and find causes. In my previous response I was trying to simply add my experience as a vegetarian and as someone with an MPN into the discussion but perhaps I was a little hasty in how I worded my opinion!

Kat

[Karol_Rua in reply to Katyak]

Thanks Kat, that's perfectly understandable

I guess that I sometimes find myself grasping at straws in an attempt to discover what caused my mutation. I have to say that I thought the opinion that a lack of amino acids in the body may make us more prone to mutations was a new one for me but . . .who knows?

I'm sensitive these days; I'll be 10 years post liver transplant next month (a blood clot damaged my liver irreparably) and I was diagnosed with ET so long ago now that it seems there are still no real advances in the whys and hows of MPNs. Sometimes its all a bit overwhelming.

Good to talk, K

[johoho]

Karol, im sorry you are disappointed by my response, i had no intention of causing upset. We all have our own opinions on this and yes I agree its good to bounce ideas of each other. I guess I was just surprised that a physio would actually say that to you, perhaps I thought that I heard concern in your message too and therefore thought my opinion might actually help. I think I got that wrong, sorry.

[Karol_Rua in reply to johoho]

No, that's ok. I had no intention of acting on her observation and just thought it was an interesting opinion I hadn't heard before. No need to apologise

[ashby6708]

Having read through all your comments I was wondering if lifestyle was worth mentioning. I have worked as an engineer in petro-chem, pharmaceutical production and heavy industry most of my working life. I am retired now aged 72 and was diagnosed with ET 3-4 years ago. I take 2x500mg Hydrea which gives me hives and little else worth mentioning. Maybe we should take a pole on occupations?

[Karol_Rua]

That's actually what I hoped this forum might bring - polls on our lifestyles and genetic makeup to assist researchers in their investigations.

I think your career sounds like you were potentially exposed to a number of chemicals. I am a scientist and was diagnosed aged 27, 14 years ago. I worked in a lab for a number of years during PhD and was exposed to quite a lot of carcinogens, always careful but who knows? A work colleague also has a MPN.

I'm on hydrea just over a year with no side effects to mention - a little backache from time to time and thirst, but nil else.

Might be changing to pegysus soon though. . .

I do think that a website that offers support and ideas is what this aspires to be - I love knowing that I now 'know' so many more people who have ET, are JAK2+ and have similar worries and fears as I. I haven't had that in 14 years.

Thanks for the correspondence