Medical alert jewelry

Hi Peter it seems to make sense to me in terms of a car accident or like the fall I just had Thurs.  if we were ubconscionce and they ran a blood test on us, they wouldn't know what they're looking at.  There is no awareness to our illness like breast cancer or colon cancer cause there's not enough of us.  I never head of it and I'm pretty medical as is my son until I got it.  I looked online, I might get one.  Engrave et, Jakafi, allergies etc.  maybe this will make me feel safer.  Best wishes always. Linda

I came around in an ambulance once not knowing where I was .

Hi scotlassie you have just made up my mind that I'm gonna order one.  I found a great site Lauren's hope.com which has a great selection for both men & women.  Zap

Hi Linda,

Yes I agree with much of what is said here but it should not stop here.  We need to ensure that MPN's are put into the public arena.  Your comments about medics and others knowing very little about these diseases needs to be addressed.  Just because they are very rare diseases should not mean they are relegated to the lowest level of learning.  These are serious ailments by any standards.  I must admit, I knew absolutely nothing about MPN's until I was diagnosed with PV, but was very aware of cancer and strokes etc.  Therein lies the difficulty.  Anyone taken to hospital with an info tag should immediately benefit as that seems to be where the best source of experience always seems to be found.  But when considering paramedics, GP's et al it does not seem to have reached these as yet and these so often are the first point of contact.  But anything which makes you feel safer is worthy value.   Good wishes.

Hi Peter. I think because there are so few of us, MPNs are put on the back burner of research.  I never knew anything about Pv or et or MF until I was dx.  In the US, from what I can gather, there are not that many top gun MPN specialists.  They're only in the big cities like New York, Houston, Arizona and a few others.  People actually fly to one of these hospitals for an appt with one of these Drs.  The pioneer dr is dr. Richard Silver and he's 88.  If things start getting tough for me I'm going to New York.  I'm only 12 miles away.  I'm definitely gonna order a medic bracelet.  It will make me feel safer.  Take care. Linda

Hi Peter in speaking about no recognition for us MPN patients, we do have a ribbon.  I don't know if you're aware of this.  Breast cancer is pink, ovarian is teal and ours is red, I imagine representing blood.  I doubt if we wore one on our shirt, anyone would know what it represents.  The forgotten group!  Linda

Hi Linda.

You sure need to travel to get to the experts I feel, although NY seems not too bad but I gain the impression that a medic bracelet would be far more useful In USA than perhaps here in UK or Europe where we are generally much closer to medical facilities.  I can imagine there is a use here though and maybe it will take off once they become known.  We do have this type of set-up which is normally run by charity organisations.  Some have an emergency button and it works perfectly well to inform those registered with the patient concerned as a relative/carer etc.  but we do not have the big open spaces such as you enjoy.  Let me know what you think of your acquisition when it arrives. Maybe it could interest my hospital too which I know already houses a charity for Leukaemia and includes MPN's too.  Keep fit.

Peter.

That is something I was not aware of.  Does it apply solely to the US or is it in use elsewhere as well ?  I suspect you are correct when you say it would not be recognised which brings me back to my former remarks about public awareness of MPN,s.  Perhaps we need a TV channel or an attachment to one maybe.  Sun shining bright here.  Trust you have the same.    

Peter.

Hi Peter I don't know if the red ribbon is just in the US or if its universal.  Do you have the pink ribbon and breast cancer day in the UK?  We have the whole month of October for  breastcancer awareness month.  Do you?  The disease was featured on the soap opera General Hospital about  3 months ago.  One of the characters was dx with Pv.  What would help our cause is a high profile person an actress or actor to get dx and talk about it and become our spokesperson.  The sun is shining here also.  It's been in the 90s all week.  Be well Linda

Hi Peter that would be a possibility to ask about red ribbons and phamplets the next time you go to your hospital.  I'll keep you informed once I ger mine. We do need to get awareness out there.  It's definitely in the dark.  Linda

Hello Linda,

i have no recollection of coloured ribbons associated with cancer in this country.  We do of course have specific days (maybe months) directed specifically at this complaint and usually they seem well supported.  Similarly there are always other groups representing cancer that are regularly exposed to publicity on TV etc that do superb support for this, and other charities.  My hospital supplies excellent literature on Cancer, MPN,s etc with some of the best supplied by NHS.  I can't say it is a problem here.  Will see what my Haematologist thinks when I next visit.

Peter.

Hi Perer we seem to have a ribbon for everything.  Yellow is for someone missing.  Remember that song "Tie a Yellow Ribbon Round The Old Oak Tree"?  I think from the 60s.  That now represents hostages being held or a child missing.  They will tie ribbons all over trees and poles.  I've seen ours on the web.  I know it's red.  I'll ask my dr when I go on Tues for my new blood counts.  See if they have them.  Take care. Linda

I remember that Yellow Ribbon song and the film that used it.  Yes I have seen pictures of all those displays you talk of.  Sure seems someone has extended the practice beyond its original concept.  You know, when following a huge disaster or horrid crime etc, I see all those bunches of flowers expressing peoples feelings at the tragedy that has occurred I just wonder what caused this public display of grief to extend to this point.  In the past such flowers would usually be confined to the close distressed family or friends and perhaps the final church service, with maybe a few extra supplied by special acquaintaces.  But today the flowers, which all look beautifully splendid, seem to deplete those furnished by family and others closely associated which get lost in the massive display.  Would not donations to a locally specified charity be a better use of the funds used.

I have often heard of others discussing this subject so it is not just a thought of mine.   Perhaps a ribbon instead ?

Hi Peter yea I agree with all the shrines of flowers people engage in.  Who could forget princess Diana's.  It looked like a football field full of flowers on tv.  I guess it's a practice people like to engage in.  You're funny, perhaps a ribbon instead.  I heard from Bill and gave him some info.  Linda

Hi Linda,

I referred Bill to you because you were such an obvious choice.  Hope he gets things sorted soon.  Seems like he was having very similar difficulties as you encountered.  He said he was from NJ and I wondered if he visits the same beach.  Anyway, I am sure he will be delighted with your assistance. It does seem there is some sort of vacuum in your parts with MPN doctors.

Nice weather - Wimbledon's coming up !!!!!!

Hi Peter I gave Bill the names of Drs in the area.  Mine in NJ as well as NY. It's my pleasure to help another pver.  I'm sure he goes to the same beaches, it's a Jersey tradition.  I'll be watching Wimbleton.  I like tennis but don't play.  Nice weather here too.  Be well Linda

You are sublime.

Peter.

Hi Peter yes I am.  I've always been this way.  Some of my friends laugh at me & tell me I should have been an FBI agent.  Lol.  Linda

I think your first case should be finding out if Angela is missing.  She has been absent for some time.

Peter.