May help ~?

Hi

Trying to do my bit although small. I have delivered informaton on Hughes syndrome, found on the Hughes syndrome foundation web site

I took it to the local hair dressers explaining with a note that as they may hear of someone with the symptoms they might be able to pass on the information. Lucky still able to walk well.

I have written to two magazines asking them to mention Hughes syndrome, with a bit of my story.

Trying to think of something else I can do as I am no longer able to work

It gives me something to feel useful for.

Karenxx

Oh yes and I would also like to be part of the research thing sorry brain gone back to sleep

6 Replies

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  • Hi there Karen this is great, what you are doing, hairdressers are a great source of talking and information sharing. I hope the magazines get back to you. Please carry on being useful, we need this very much. Thanks again. Mary F x

  • Well done Karen. Hairdressers are a good idea. I gave a short talk and handed out leaflets to the four stylists at my old hairdressers and as a result we almost immedietly identified two women with APS/Lupus. They had been suffering for a long time. Now both doing much better on treatment. Have a good day. Love Jane xx

  • Well done Karen Thanks for trying to help

    Take care x Sue

  • Thats great karen you really are inspirational and yes please please do comment on dorothy's questions regarding moving forward to get collaborative evidence from a patients perspective kathy xx great idea i will do the same at my salon xx

  • Hi Karen, it's great work your doing. I recently sent a letter to the embarrassing bodies programme about doing an article on Hughes. Maybe if more people came forward and did the same, maybe it will open a few eyes that way x

  • Well done Sam being muddled headed is embarrassing it is about time that showed something other tan ladies gardens

    Karen xx

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