By David Coy
X-linked myotubular myopathy (XLMTM) is a rare genetic neuromuscular disorder that is characterized by muscle weakness. Rarely, symptoms may not present until adolescence or adulthood. Common symptoms include mild to profound muscle weakness, diminished muscle tone (hypotonia or “floppiness”), feeding difficulties, and potentially severe breathing complications (respiratory distress). Feeding difficulties and respiratory distress develop because of weakness of the muscles that are involved in swallowing and breathing. The overall severity of the disorder can range from mildly affected individuals to individuals who develop severe, life-threatening complications during infancy and early childhood. Most affected individuals have a severe form of the disorder and respiratory failure is an almost uniform occurrence. XLMTM is caused by mutations to the myotubularin (MTM1) gene. (rarediseases.org)
Now think of a family who cares for a relative who lives with a serious condition during a new experience of a virus previously unknown, and hospital and medical care was being prioritized for the virus, and people are forced to isolate. Can you say panic and grief if or when legitimate medical need is considered secondary? There are many causes that bring grief to our lives – financial, mental health, relationships, and physical. With all we are compelled to learn new ways of living, adjusting to change, and opportunity to care for others who are struggling more than we, and panic is lessened.
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