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Sticky Blood-Hughes Syndrome Support
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Appointment with local paper!

I want to be listened to!!!!

I have made the appointment at last with our local paper: 'The Burton Mail'!!

I am right now jotting everything I want to say to them & hopefully I say everything needed!

If anyone has anything they think should be added or perhaps a short stort themselves have that could maybe be added? no names mentioned tho'.

I just want to help raise awareness as much as I can....if it means 1 area at a time I figured it all helps......a lot of us were found out later than we should have been with drastic endings or not listened to or taken seriously....if I can help spread the message that if you have the early symptoms keep pushing until you get the appropiate tests....I WILL!!!

Please help me any way you can,

.............................the persistant pain in the ass!!! xx

12 Replies

Hi there, what a good idea, and Kate H has a list of questions for journalists I think, which may be useful. Go for it. Mary x


o suzy -you have such a suttle way about you , i love it --- do you think the squirrel will drive them NUTS - or viseversa. where you come up with these pics is awsome. now is that pic going to paper also .--- the squirrel is missing combat boots????---------------------jet


Hi Suzy - email me at kate.hindle@hughes-syndrome.org so i can get your email address and I will send over our journalist's factsheet - it saves them having to wade through masses of literature/website materials. Also, please let them know that we have over 100 case studies who are happy to help :)


Well Done and good luck x


Good for you, if I can do anything please let me know.

Well done love Karen xx


It has now been arranged for Thursday to give me a little more time to get everything together, thanks for your support : ) xx


Its a Prairie dog jet, not a squirrel !!!!

I has a silly sense of humor & I love finding new pics for different subjects! if I havn't got my own animals to pose I find someone elses !!

I've emailed Kate so hopefully will recieve them in time as I'm seeing the journalist on Thursday at 12pm.

Thanks again to all & if you can think of anything also to say to them that perhaps may help, let me know here or pm me if you prefer x


Hi Suzy

Well done go for it, "Every little helps"




Hi Suzy

You are a hero. Thanks for all your efforts on our behalf

Love your Animal Mad Friend x


Hi Suzy,

Go girl go ;-) good luck for thursday k xxx


Hi all, well I wrote out an article for the Burton Mail, with info', symptoms, medications, short stories, websites etc also a disc with Hughes logos on it, they say it should go in a Sat' paper & should be 1-2 pages!!

I will show you a copy of it somehow if/when it goes in.

Sue xx


Well done Sue!!!

Looking forward to seeing it somehow


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