Hello readers and followers of my blog. Like you, I am also coping and trying to understand what my new "normal" is, or will be like following Covid-19. For many in our GNEM community we were already practicing some form of "shelter-in-place" due to reduced mobility because of the limitations associated with GNEM. Despite our physical limitations we were still able to have some semblance of social interaction with others. Now, many of us feel isolated and fearful because of the high contagion factor of Covid-19. For me, I have not been able to go out for more than one hundred days to my aqua therapy nor the gym, and my fear is that I will be weaker once I resume these activities again. I know we are Rare Warriors and we will adapt and change to our new situation.
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Links for Recent Articles(Abstracts) and Resources for GNEM:
- Dr. S. Rosenbaum et al, on a mouse model: Upregulation of Hallmark Muscle Genes Protects Gne M743T/M743 Mutated Knock-in Mice...
- Drs. T. Gidaro, A. Behin et al, on Quantitative Nuclear Magnetic Resonance Imaging Detects Subclinical Changes Over 1 Year in Skeletal Muscle of GNEM
- Drs. J-H. Shin, Y-E. Park et al, on Progression of GNE Myopathy Based on Patient Reported Outcome (South Korea).
- Resources for Coping with Chronic Illness
- J. Yashari, M.D. on: A psychiatrist's Guide to coping with COVID19
- A Private Online Group for Children of GNEM Patients