I regularly look at Patient Power and although it's an American programme I wonder how many of you find it helpful as my haemotologist doesn't seem aware of much of what they say I.e. A form asking us to list how we are feeling, in order to gauge our quality of life. There hasn't been much on Parient Power that coincides with my treatment and I wonder how many of you find it helpful. It sounds very positive on the surface but if our heamos are not familiar with the information from Patient Poweri is there any point in following it. I would appreciate any thoughts on this. Thanks. Happy New Year by the way. Hope you are as good as can be expected. Mary
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Hi Mary, Happy New Year! I found the Patient Power videos and events particularly useful at the beginning of my diagnosis, when starting to learn about the disease. Now I mostly look for info on interferon outcomes (which I take) and new treatments. Apart from the funding of the treatments, which is very different in the US from the U.K. where I am, I found the info very relevant. There is a form to assess symptom burden in the U.K. as well, it was in fact distributed to all patients that attended the MPN Voice forum in London last November. If your haemo is not aware of the MPN info shared in Patient Power (and in other similar fora) all the more reason for you to be informed about it! Susana x
Hi Mary. Over the 24+ years of dealing with an MPN I have always tried to keep up with new information. It was difficult at first as the internet was in its infancy but now there is a plethora of information out there. When reading articles I always ask who has written it and why - will they get financial gain from promoting whatever they are advocating? This is a great site for personal anecdotes and some contributors provide very useful links to info but there are some good unbiased sites that provide information from the expert practitioners in the area of MPNs and I personally think that Patient Power is an excellent example of this.
Over the years I have found the need for me to be my own advocate for treatment and you need to be well informed to educate some doctors who might not know much about our rare conditions. I would suggest that you find an expert in MPN management and see them perhaps only once a year but regular assessment and management can be done locally under the guidance of the expert. That certainly works for me. If my local haematologist is not certain about something he can the email the expert who has my case notes and can advise.
A long winded response but I hope helpful to you. Very best wishes, Jan
Please do not expect too much of your haemo. They spend all day with patients one after another and after that there is the paperwork. Last thing he/she may want to do or even have the time for is to read about any extras. Here on MPN Voice we are doing our own research and network with each other. You do not need necessarily to have a degree in medicine, biochemistry or genetics to find answers, most of the answers are in plain sight, they just need to be discovered. What is this Patient Power anyway, is it something happening in America?
Yup I use Patient Power regularly and it’s been of immense help to me, the videos and transcripts are excellent, the information via Andrew Schorr is invaluable and I have also joined various Patient meetings and expert question times online too that Andrew organises which have been great.
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