Now that 4 patients have added blogs to highlight the issues facing us and the positive futures those patients believe they can have, I got this message from Julie who runs the Cheshire cardiomyopathyUk support group.
I finally met Julie and her DCM patient daughter Jenny during my cycle & they both highlight what a wonderful journey my life is now.
Julie strives to support patients, raise funds and awareness with Jenny pushing ahead with university education trying to live a full & normal life hopefully both will add blogs in future.
I wanted to post this message to highlight more positivity from different angles to just patients.
Julie
"I have been busy too with our support group and have actually had consultants emailing me offering to come and give talks to our group. Got me thinking about how actually our doctors are encouraging and supporting our efforts to find out accurate information about the condition and would actually rather have patients who take control and give them real feed back. Donna being invited to give a patient perspective is exactly what Jenny has been asked to do at a nursing conference in London next month. Doctors are listening right now - they want to know the reality and they are looking hard at providing the not just the right medications but the right support too. I have hope for the future."
Thank you Julie
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