Currently in hospital as having a bad time with my dystonia.
Unfortunately no one knows what it is, so having to explain which is fine as I know its very rare then they ask about any other health problems. I have essential thrombocytopenia jak2 + and no one knows that it is, I've had to explain it 5 times to different medical professionals.
This is so disappointing. How can we educate medical professionals about this?
I'm afraid any of us hospitalised in a non haematology ward has come across this and there are many dismal posts on here about GPs
Not much help to you as you are actually in hospital (and I really hope they can help you) but I now keep a printout of the relevant page from the MPNvoice website dealing with my Post ET MF with my wash bag in case I have to be admitted. I've noticed eyes glazing over when I try to explain. I think another forum member on here suggested it and I thought it was the only solution.
In the meantime perhaps you could bookmark the page on your phone or tablet if you have one with you and pass that to them. Even better if there was a sympathetic member of staff who might print it out for you. We shouldn't have to do this but I fear our rarity demands it.
A practice nurse rather dismissed me when I tried to explain that I had a different disease from that she seemed to have picked up from my GP's records and said that 'everyone says their cancer is rare'. I gave her a copy. She must have read it and scanned it on to my notes as at the next blood test she spoke knowledgeably and kindly to me about mpns.
Best wishes Diana
Hi Avamia, , I'm sorry you find yourself in hospital and hope you get sorted out and home soon. Your dystonia sounds very debilitating and coupled with your ET is certainly no fun. You are unfortunate to have a double whammy of rare conditions and it really doesn't surprise me that you're constantly needing to provide explanation of each. I suspect if you're on a general ward you'll have more explaining to do.
Ideally you would be put under the charge of team that understands your conditions and their impact upon you. But if you're owt like me you ain't that lucky. I too have had to reel off a brief description of Myelofibrosis hundreds of times to various health professionals.
Maybe we sometimes expect too much but I don't think it's too much to ask of those treating us to have checked out a broad understanding of what ails us instead of relying on us educating them.
I'm sure I don't know what the answer is to this conundrum. Maybe it's down to the professionalism of the individual to better know his or her patients.
Get well soon - Chris
This is very true you would think health professionals would read your file before hand and do some research if not aware or talk to someone that is away not make you feel uncomfortable and a freak.
You're right - we know our problem is rare and I don't blame doctors forgetting something they may only have heard of briefly during training. However being dismissed as a bit of fusspot about something so serious is awful when nowadays it is so easy to find the information quickly. I thought our notes being electronic would help but it doesn't seem always to work that way.It is very reliant on us as patients being proactive on our own account- a good thing to do in any case - but at times we might not be well enough or capable to do this.As Chris says you've got a double whammy so do hope you get some relief. Diana
There are many rare illnesses out there so I don’t expect they can know all of them.Interestingly, I told a consultant that I had essential thrombosis and from the name he worked out that I had too many platelets.
Not just these conditions ! My mother had really bad leg ulcers due to circulation issues - she was also overweight, but not obese. If she'd had a pound for every time a doctor, nurse or administrator asked her about "her diabetes" - which she never had - she would have been a rich woman!
letter from health board Scotland
Platelets on health program radio 4 yesterday 
Needing some good vibes
High HCT, do I need to worry?
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