Kennedys Disease Community
Swallowing disorder

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06-21-2018, 11:08 AM
Lori Ryan
Swallowing disorder
Hi KD world does anyone here have Achalaisa? I am a female carrier and developed this a few years ago. Any males or females have this? I also have dysphonia diagnosed 30 years ago. Doctor said that they don't have enough information to link it to Kennedy's but I think it's suspicious! God bless everyone!
06-21-2018, 02:07 PM
Bruce
Lori, many of us with KD experience swallowing difficulties - especially later in life. I have not specifically been diagnosed with Achalaisa, but I was told my lower esophageal sphincter muscle is not working properly causing many issues.

I was told to change my eating habits to minimize the impact of the weakened sphincter muscle on my swallowing:

1. Stop smoking.
2. Avoid foods or beverages that give you heartburn.
3. Drink plenty of fluid when eating.
4. Chew your food well.
5. Eat more frequent, smaller meals.
6. Avoid eating for three hours before you go to bed.

I also was given some swallowing exercised that I practice daily.
06-21-2018, 02:40 PM
ToddAllen
Hi Lori, I've not seen achalasia as a common finding in KD so any linkage is probably minor and I'd suspect one or more other more significant factors in developing that condition. Dysphonia seems much more likely to be strongly related to KD as most people with KD develop weakness and/or spasms of the muscles of the throat and larynx and mild vocal alterations are very common. From attending KD conferences I'd guess maybe 10% of those with KD have fairly severe vocal alterations that might qualify as dysphonia. Recent research suggests females with KD are affected by it in subtle ways that mostly go undiagnosed. As a female developing overt symptoms from KD would be unusual but not unheard of. Regardless of what combination of things are causing your conditions I'd look for things known to aggravate a wide range of conditions such as chronic stress, poor sleep, nutritional deficiencies, toxin exposures, being significantly overweight or diabetic, etc.
08-03-2018, 02:04 PM
Lori Ryan
Hi guys thanks for responding! I lost 50 pounds before doctors found my Achalaisa. Finally, after esophagus dilated and stomach flap opened I gained back my strength. Just know my heart is with you all. My dad choked a lot everyday on foods but still ate like a horse! God bless you all who are struggling with KD. My heart is with you!!