ive come across an interesting article that I think some of you might be interested in. There are approx. 7.35 billion people in the world. Pv affects 2 people per 100,000. Odds of getting Pv are 0.0019%. Approx 147,000 people have Pv. Wow! Zap
Hello Linda'
Yes I was aware of the rarity figures which were originally given to me by my Haematologist. That is no compensateion though. I"d sooner be one of the 99,998 though, wouldn't you?
Peter.
Hi Peter thanks for your reply. Hope all your dr visits prove to be uneventful. I've recovered from my event. I still can't believe it. Like you said, when it rains, it pours. I'm sure you'll be attending the wedding. It is kind of far off, so don't fret it for a while. Aren't those odds astonishing? I wasn't aware of the small number of us there are. Life sure was better being in the 99.998% group. But this is our cross to bear and all we can do is take our meds and hope. Maybe something new is coming on the horizon. Be well. Linda
Hi Linda. It sure spells out why we meet so few other sufferers face to face. You are certainly a little more upbeat now in your outlook. Obviously the sunshine is doing its best for you. Hope is about all we have got at this time, but as you say, keep on rolling. I will let you know if any of my forthcoming appointments raise anything of interest. Good wishes.
Peter.
Hello there. Those are some odds.
I know that this forum is very strict about letting us quote from outside sources, as I have tried to direct people to websites and my comments have been held up, but would you be able to tell us where you saw the article? I am fascinated.
You see, I am not altogether certain that the rarity is uniformly spread over the globe. I was diagnosed just about a year ago and the doctor who made my diagnosis was spot on the first time he met me. The funny thing is, I went to my GP after having had painful blue fingers in my left hand for a couple of weeks. My GP was mystified and sent me off to the local hospital straight away. The local hospital runs an outpatients department, sort of along the lines of A&E but catering for neither A nor E, just plain oddities who walk in off the street. There is one consuktant on duty at all times, one junior doctor and a few nurses. The consultants normally work in the hospital in their own speciality and take turns on a rota basis in this funny outpatients unit.
The consultant who saw me was a geriatric specialist. He took one blood sample and diagnosed me there and then, the only caveat being that I needed an ultrasound and a test for the JAK2 mutation. These took two months to come back and there I was.
Now, what I would like to know is how could a geriatric consultant just look at one blood sample and come up with that spot on diagnosis? Also, I have heard patients in the haematology unit talking to their family members and mentioning such things as Hydroxycarbamide. I don't want to barge in and ask "Have you got PV too?" but I really am beginning to wonder.
Hi Peter you are so right. Because there are so few of us, the chances of meeting another pver are quite slim. That was why I was so excited about that meeting. Since I didn't go, for all I know maybe there were 1 or 2 people there. I'll never eat chicken again lol! We haven't had sunshine in at least a week. It's been cold, like 50s or 60 for a high and quite rainy. Tomorrow I'm going to have to wear a sweater when I go out for Mother's Day. Next week the sunshine will be back and the temperature will be in the 80s. Please keep me posted on your upcoming dr appts. Hoping for the best. Linda
Hi Angela, I saw it on another MPN website of which I can't divulge due to what you said about the strictness here. I ran it by my son who's a math wizard and he came up with the same number so I'm believing it's pretty accurate. That's funny about barging in to another patients conversation. Why don't you give it a try the next time you hear HU. Maybe they'd be happy to see & talk with you too. Why not? Linda
Thanks for your reply. I'm glad that your son is a whizz kid at maths because I would still be sitting at my desk sucking the end of my pen.
I wonder how many people through history have contracted this illness (either primary or secondary) and dropped dead from a stroke or a heart attack before anyone disagnosed them with anything at all. Then just written down as victim of heart disease.
How many people now, worldwide, don't have access to modern medicine, a doctor or a hospital and perhaps live and die without their condition being recognised, never mind treated?
I think in reality that the 147,000 is a very low estimate. But of course, there is no way to prove that.
Hi Angela I , like you, would be sucking on my pen also. My son obviously takes after his dad. You know Siri from the iPhone? I call my son Ziri cause he's got all the answers. Last name starts with a Z. You're probably right about many undiagnosed deaths from Pv. Then of course there's people that never go to a dr and are not dx. It does seem low but based on that equation it's prob real close to the number. Lucky us, right? We should play the lottery. Maybe we can beat those odds too.
The statistics you quote are the same as available in UK. I have read these on several documents given to me by the Haematologist over many years. I remember it as 2 people (or 2.5) in 100,000 acquire PV. It has never changed and is stated to be on a global basis. Angela raises some very valid points in her discussion and maybe I can shed a little light from her experiences. An entry in a British Medical Association book I have describes how PV occurs naturally in people living in or visiting high altitudes due to the reduced air pressure and thereby reduced oxygen in the blood. This can result in any disorder that impairs the supply of oxygen to the blood. Without going into technicalities, there is an increase in the blood carrying oxygen to compensate for the reduced oxygen supply. Returning to sea level or to an effective treatment, the blood soon returns to normal. PV can also develop through diseases of the liver and kidneys. PV primarily develops in people over 40. The estimate for UK is 300 but in US this will be higher because of the greater population. This may well answer the question raised about the diagnosis by doctors and the early diagnosis of PV as explained. Is it a question of hard experience by medics dealing with travellers used to high living or visiting high latitudes, and needing to visit a doctor afterwards. Most of these mountains etc. are spread widely across the globe.
I would point out that Hydroxycarbamide is not confined to treating PV but is also used for treating other serious blood disorders. With PV it has until recently been considered the best availanble treatment, but other drugs are now becoming used more accurately directed at the disorder itself.
I have some sympathy with Angela and her predicament with the rules etc. We all get caught up in these sometimes. Hope this information is useful.
Peter.
Thank you very much Peter for your comprehensive answer.
I am so puzzled by how I came to be the one to get this disease. I would love to create some sort of check list to find a common origin for our common (well, uncommon but you know what I mean) problem.
Hi Peter your explanation is spot on. You have been in this predicument longer than Angela or myself and you have definitely done your homework. I am just starting to "get it" after 5 years. It really is a confusing disease. It's almost like you need an md degree. Thank you for shedding light on this for myself, Angela and many others that read this. You're a rock star! Linda
Hi Angela,
Many thanks for your reply. Your previous message was very interesting.
You will probably already know that most cases of PV are traced to a defective gene at birth. The disease is not hereditary though there are always exceptions. PV can be acquired later by virtue of being concerned with other illnesses e.g.liver, kidney etc. Basically it is due to the overproduction of red cells which is not confined just to MPN's. There does not appear to be a singular reason why people contract this disorder but the gene aspect is the most formidable. It remains to be seen as to why this should be so and maybe the research being undertaken these days will give us an answer in due course. Do not feel yourself responsible for your illness, it is almost certainly beyond your control. I know that I was very surprised when I was advised I had this predicament. It was not in the family genes for sure. There is one beguiling fact that has always intrigued me and that is the association of PV with gout. I know it is something to do with the uric acid in blood but just how the two connect I cannot say and I have never received a revealing answer to those who I feel might know. It has been mentioned briefly in articles I have read but never a promising result.
Good luck Angela, nice to hear from you again.
Peter.
Well, there you are you see! No, I didn't know that the gene was defective from birth. I thought that something in the environment had scuppered me.
I grew up in South Yorkshire, only a mile or so from a vast coking plant, half a dozen miles from the steelworks of the Don valley and the same again from any number of coal mines. When I got the diagnosis I wondered if the high levels of air and water pollution, and the associated outpouring of coal tars and phenols might have set me off. The Don valley, now a deserted rust belt with no heavy industry now to speak of, is a hotspot for bladder cancer, which my brother has -he's in his 70s and got his diagnosis last year.
I am a long way in terms of years from all that pollution. I now live in the utter rural tranquillity of the Peak District. Not even a drop of a neonicotinoid is allowed to pass over the National Park!
And yet your saying that it is present at birth has me thinking again. My father developed vitamin B12 deficiency in his 60/s and died of pancreatic cancer. I have a notion that vitamin B12 is something to do with the blood. Maybe there is a link for a potential in me. Too late to find out now anyway.
No, I don't worry about it at all. I firmly believe in accepting one's fate. It's pointless to think otherwise! I can't say that I enjoy having PV but it could be a whole lot worse. That's how I see it anyway.
So, 2 people per 100,000. That means that there are about 15 other people here in Derbyshire with it. Shame we don't all have some sort of mark of Cain on our foreheads so that we could wave to each other.
There is a suggestion that one can be affected by some types of strong electronic radiation over a period (e.g. Chernobyl etc) but I am still hoping to learn more on this. There is plenty of this radiation around without concerning the nuclear aspect so it is not far-fetched. I was in Turkey for a few years at the time of Chernobyl and that was bad. Can't say whether I was affected but it sure covered a huge area. Russia and Turkey are not far removed.
You must have a few of my traits for I have a very investigative outlook particularly when something affects me. With the problems you describe in Yorkshire and that area I should have thought that if those conditions you describe had been a cause of PV then surely it was so rife that others around must have been affected too. So I feel that could not be your probable cause. I know the area fairly well having spent a couple of years roving around there. More to the north though. Also Derbyshire and the lakes. I am not aware that pancreatic cancer or the like has ever been connected to PV but it is so rare, who yet can tell. With the propensity of people to deface their bodies with massive tattoos your suggestion might be a good consideration. The forehead seems a fine spot but a medical one may be lost in the maze.
Thank you Angela for you kind comments and information. Just left for me to say good-bye from due south. Peter.
Hello again Linda.
Thanks for your kind remarks. I take no credit whatsoever for being diagnosed with PV before most others, but it does give me the opportunity give a little comfort and knowledge to other lesser mortal sufferers. Your classification for understanding PV is quite real. It is not as if the university corridors or doctors surgeries are equipped with the necessary studying literature to purge oneself with, is it? Will carry on regardless. Who knows what the future foreholds. Have a good day Linda.
Peter.
Just by the by Peter, and before you disappear, do you know why the blood that we donate to venesections is not used for anything?
Can another person "catch" PV from our "infected" blood? And, if so, could we have been "infected" by say mosquito bites? A few years ago, I went on a camping holiday in Ethiopia. I was the only person to be bitten by mosquitos and I was severely bitten. 169 bites in two weeks and they were all like small volcanoes. If another person in the area had PV would it be possible do you think for me to have contracted it that way?
Just a thought to mull over.....
Hi Peter I don't know what we would do without the internet. No, I am not being given hardly any literature on this disease by my Drs. A few generic pages, that's it. I had ovarian cancer I 1999. I had 6 rounds of chemo- cisplatin and taxol. I feel that might have done something to my marrow. I am almost 18 yrs Ned (no evidence of disease) which is almost never seen. I wonder if they know the poisons they're pumping in us will come back to haunt us but figure we won't be alive by that time. I'm so glad we have each other. There is no point talking to friends or family about it. They don't get it! We do. Well, off to my Mothers Day dinner. Thank you for sharing your knowledge, it's much aprreciated. Linda
Hi Angela,
I did raise this point with my Haematologist some time ago and was told the blood from PV patients is not considered for use with other patients. It is OK for research purposes which apparently where most of it will end up. From the mosquito angle, I too spent a number of years in the Middle East and also N. Africa, and other spots too and like you received the attention of these blighters. The only problem arises if you contract malaria which can remain in the body for ages, even after using anti-malaria treatments. I have a son who travels the world extensively and despite his best efforts, still caught a bad strain of malaria, yet took every precaution possible. On one occasion he returned home very ill and the local doctors couldnt make it out.
It wasn't until I mentioned malaria to the medics that they understood. My son is not allowed to donate blood. With PV this is not transmitted from one human to another and is acquired by a defective gene or perhaps from an illness with another internal organ. PV is not known for being a transmittable disease. Hope this answers your queries Angela.
Peter.
Hello Linda,
It does seem sad that you are unable to acquire information at home on PV etc. Most of my information is passed on to me by my hospital haematologist. I have some very useful booklets provided via the NHS and am able to discuss any problems or queries with any of the Haematology Team. They have never failed yet to come up with a valid answer. Sadly, my sister succumbed to the cancer you mention so I sympathise with your situation. Now I have never had much of a connection with cancer illnesses but some of our friends have been hit by pancreatic cancer. They were all extremely fit and healthy but it seemed to make no difference. Apart from my sister we have had no dealings with this horrid disorder. I could never offer an opinion on your circumstances as I know so little about them. But I can agree about the possibility of things within our environment being a latent factor in some of the diseases around. I know that my sister who was a qualified NHS nurse, held certain views in this direction but I will not expand further. You make a vary valid point about family being somewhat disinterested in PV. I suspect this comes from its rarity factor and that they, like many other too just know so little about it Linda. I am however, very impressed with the nurses at my local surgery as they always seem to want information about MPN"s and to understand these diseases. They have been a great help too. Enjoy you Mothers Day meal - I trust chicken is off the menu.!!!
Peter.