I am an in home provider for a woman with this rare disease. My knowledge is extremely limited. Any useful information would be helpful.
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I realize this is out of date now, but this disease runs in my father’s side of the family. Thankfully, my branch has been bypassed. If you still need or desire information about it, please let me know!
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Lisa, unfortunately, it is out of date for her.
She does have two daughters that I still connect with though. I’m sure they would love any info that you have. I’m happy to pass it along.
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