pick me up!

[leyton]

Recently i found an article on hughes syndrome in pick me up magazine issue 12, 20th march. I'm so pleased that hughes is becoming recognised more and more. I have recently been in hospital for a couple of iron transfusions and feel i am not on my own as everyone i spoke to was aware and knew about hughes. this was not the case 3 years ago when i was first diagnosed well done to everyone for making this possible.

[Manofmendip]

Thank you Leyton.

Where are you from and which hospital did you go to?

Dave

[leyton in reply to Manofmendip]

preston lancs it was chorley hospital

[Hidden]

Great to hear that Leyton - the HSF has only been able to do this thanks to our marvellous media volunteers

I am just organising another article in That's Life magazine now - I hope this will filter through too

[leyton in reply to Hidden]

yes i will make sure i read it thxs xx

[MaryF Administrator in reply to Hidden]

Yes, do hand them on to me so I can load them up on here as that helps with what we are trying to do - information sharing and advocacy. Thanks. MaryF

[emmaj]

That was my article,and another was in the daily mail a couple of weeks ago so were definately getting there im so glad the recent attention was given to you x

[leyton in reply to emmaj]

yes it is getting there thxs to people like you xx

[Hidden in reply to emmaj]

Thanks Emma - if it wasn't for people like you, we would be able to keep raising awareness x

Any news on the other publications yet? Fingers crossed ... x

[Manofmendip]

This is all fantastic news.

Dave

[MaryF Administrator]

Yes, good news all round! MaryF

[Suzypawz]

It is always good to know the awareness is still going on, many hospitals are still not up to date with it tho unfortunetly....I always seem to have trouble & often end up having to give them advice on medication or treatment!! very frustrating, sometimes I think it's because they are scared to make the wrong diagnosis due to not having the knowledge still.....oh well one day hopefully they'll all be up to date with Hughes Syndrome!

[emmaj]

My uncle at under 40 years of age is in hospital at the moment for the 2nd time with possble heart attack,my mum (his sister), my nan (his mother)and her sister all died of early onset dementia before 50,he has severe depression-through my journey my consultant and two others that i have seen are all convnvced it was hughes left untreated that did it,and i have aps confirmed,yet the doctors still wont look at the possibility of his condition being auto immune related!! unbelieveable x

[Hidden in reply to emmaj]

Is your uncle's heart attack related to ASP? Lost my sister through this disease x

[fizzymoon]

Hi Are you in the Preston area?

I hope you don't mind me asking I saw you mentioned Preston and Chorley hospital in a post I came upon by accident!

I just wondered if you could recommend a specialist. I saw Mr punekaar, haemotologist at Preston for the first time last week and he seems good but wondered if you'd seen a rheumatologist or aps specialist?

Thanks