Posted , 3 users are following.
Hi,
My sweet dad has lost his muscles in his arms and neck,
And got diagnosed with "man in the Burrell" syndrome.
Anyone here have any advice for us?
Is there anything he can do? Some alternative treatment? Anything??
There is so little information about this, so I'm desperate for help.
Stine
0 likes, 7 replies
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andrewwakelin stine_95609
Posted
I don't recognise that term. Were you given this diagnosis verbally? Do you think they could have meant "Guillain-Barré syndrome"? It sounds very similar. If that is it, there are some treatments available. All the best.
stine_95609 andrewwakelin
Posted
Thank you so much for your answer, I really appreciate it.
The syndrome it's what i wrote ( man in the Burrell), there is some articles but no one says anything about treatment or hopes for the future for a better life. My dad lives in Norway which has pretty conservative treatments, that's why I hope there is another country who has some sort of medicine or can operate him so he will have a better life. We are willing to do everything
andrewwakelin stine_95609
Posted
That is odd, I can't find anything about it at all. The phrase seems not to make sense in English as Burrell is a surname, or as Burel it seems to be a type of cloth. Man in the cloth symdrome???
stine_95609 andrewwakelin
Posted
Yes, i see it now. It's translated different, it's barell, not Burrell. Still very little information, actually it's not one single hit in Norwegian
andrewwakelin stine_95609
Posted
Oh I see, I have found it now – "man-in-the-barrel syndrome". It is with two Rs and only one L. As you say, it is extremely rare. There are quite a few references in English if you Google it as "man-in-the-barrel syndrome".
PeterAK stine_95609
Posted
I see your problem. There may be a "translation" issue or a diffrent name used in different countries. If you haven't already done so you might research the NIH GARD (Genetic and Rare Diseases) or NORD (National Organization of Rare Disorders) web pages. It could take a bit of time but these pages do have a lot of information. Hopefully, you find something.
stine_95609 PeterAK
Posted