NCATS Toolkit - Home Living with Rare Disease was an isolating experience for so many, until the advent of the internet and social media. It's exciting to see the Rare Disease community as a whole coming together with tool kits and other resources! We stand on the precipice of fabulous new Rare Disease research initiatives. #RareDiseaseDay 2018 is less than a week away. Whether your zebra herd is #Castlemans, #PXE or #arachnoiditis, we are all of the same group! It's exciting time for Rare Disease.
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Looking for some great, timely articles on Chronic Pain, Living with Chronic and Rare Disease and so much more? Top article this week, just in time for summer : https://themighty.com/2018/07/medications-cause-sun-heat-sensitivity/ Full ACMCRN Arachnoiditis Review July 15, 2018 Come join us in our Facebook groups: https://www.facebook.com/groups/ACMCRN/ https://www.facebook.com/groups/arachwarriors/?ref=br_rs
Hold my hand: Touching may ease pain by syncing brainwaves For some of us living with Rare Disease, significant, permanent, intractable chronic pain is a daily reality. We spend our time trying to find ways to cope with this pain so that we can remain active and functioning participants in society. But those of us living in such distress often find that the only relief comes when an low stable opioid dose is added to our multi model treatment plans. Those previously in too much pain to be active often find a restoration of some degree of function with the proper techniques and medications over time. It can take years to get the right balance of medicine, physical activity and rest, but the current North American Opioid Crisis is putting pressure on those of us who use such medications to give them up. While we wait for better pain treatments to be researched and created, we must do all we can to employ as many techniques as possible together to find some degree of relief. It's