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Sticky Blood-Hughes Syndrome Support
8,645 members8,743 posts

THANK YOU ALL !!!!!!!!!!!!!!!!


I came across this site by accident as I couldn't sleep last night/early morning so as I have my laptop for company as the majority of the country sleeps I registered on this site and wrote a blog and a question.

I THANK YOU ALL who have responded.

Sometimes I feel so lonely with this illness that I say to myself DON'T BE SO SELFISH there are people out there who are worse than YOU, so I put on a brave face and think that I am LUCKY.

I am currently not feeling too well, I'm on steroids and antibiotics and to top it all I have a UTi.

But I am THANKING YOU ALL as I feel that at LAST I am able able to share my thoughts, feelings, frustration bad times and hopefully good times with

people who will not JUDGE ME because I have a illness they may not understand, but with people who will listen, understand, share and SUPPORT me as I hope I can do the same.

ONCE AGAIN THANK YOU ALL !!!!!!!!!!!!!!!!!!!

9 Replies

Hi there, good for you, and thank you for giving us all good feedback, you will feel a bit brighter and more yourself soon. Mary F x

ps when I am brewing and infection or a virus and the UTI's really creep up on me...... I have insomnia which is off the scale, unti whatever it is calms down!


Hi hun, sorry havnt contaced you before, I am soooo glad you have found us as we all need support & someone to talk tothat will undersatand.

I hope you will feel better soon, I too am not too good hence why not been on many posts over the last couple of weeks but I intend to be back :)

Al the best, love to hear & read more about you soon x


Hi brown chocolate -welcome to our group where, are you from / your profile has names i've never hrard?it's hard to try to be positive, but in the long run it does help . you cant let it beat you . humor is agood thing ,it keeps us sane.you have chosen a very rich name ! HA this is good.alot of us share the same symtoms ,but again we can be very unique. but we can and will help when ever we can , even if only to bring a grin or a smile we will be here .---------- jet


hi brown chocolate pillows supporting the head and neck knees bent supporting the lap top i know that position oh so well ;-) like you i too check the site late at night early hours when i just cant sleep searching desperately for answers and words of support - and this is the place to find it - hope you feel better soon hun i would say cranberry juice is good for uti's but not on warfarin so i eat lots of bio yoghurts its good for thrush too ;-) that usual comes after the abx! but keep smiling hun go on u tube and put in mrs browns boys that will cheer u up if you got a sense of humour like mine it works for me when feeling low and yuck kx


Good morning KathyD64,

I am wide awake at 1.05am.

I just love this website!!!!!!!!!!

It is far BETTER than F---b--k and all those other boring nosy internet sites.

I feel that we have more in common. We all have HOPE!!!!!!!!!!!


Thanks Brown Chocolate - our charity, the HSF, set up this site to get patients to help other patients and I'm so glad you're finding it so useful :) We have found that the patients are the ones living with Hughes day to day and, although the doctors are wonderful at diagnosis and treating our condition, they don't know how to manage it as well as us patients.

We have to have the FB site otherwise we look out of touch, but I think of that as more of a shop window and alert system rather a place where people should post personal comments.

Happy to have you with us,

Kate :)


Hi brown chocolate, and welcome to the site. It is great to have all who have so much in common. You will enjoy this site also. I too am a night person so understand you completely. I agree with you we all have HOPE!!!!!!!!

I live in US but still enjoy this site more than any other.


Hi brown chocolate, glad you found us all, and welcome. Relax......you are in the best place you cyberly could be for friendship, support and an ear to listen, a shoulder to cry on and a tablet to write down your thoughts, moans groans and all here for each other.

Take care.


Hi everyone,

I used to get UTI's and cystitis all the time (mostly cystitis, which is misdiagnosed as UTI quite often) .... And what works for me is probiotic acidophilus. I take one in the morning and a cranberry pill at night and I haven't had a problem since. Hope this helps some of you....

Take care


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