I have noticed the pitosis starting to affect me not to a huge extent yet but just noticed more drooping not enough to affect driving or other activity yet.
The dysphagia is starting though I have good and bad days so I have to be mindful of my diet on the bad days to avoid choking. It’s weird on the bad days it is like I cant feel a swallow it’s kind of scary. Has anyone had the balloon procedure?
I think if the bad days become more prevalent I need to start thinking about it more. Where I live (Georgia, US) no doctor or hospital is aware of this disease so I am told it’s a feeding tube if it gets worse I know there are other options and some doctors or hospitals that are more educated about this disease. What can you tell me?
The dysphagia part is what worries me so much. Of course those that are also affected with arm/leg impairment is also a big concern. My mom had the pitosis I dont recall her having the dysphagia and my grandma had such bad dysphagia she lost tremendous weight and died of pneumonia but at that time little was known of disease.
PS Has anyone heard about the BB 301 trials yet by Benetec? I hope they can go to human trials soon for all of us.
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