Sticky Blood-Hughes Syndrome Support

pick me up!

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.

15 Replies
oldestnewest

Thank you Leyton.

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

Dave

Reply

preston lancs it was chorley hospital

Reply

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 :)

Reply

yes i will make sure i read it thxs xx

Reply

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

Reply

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

Reply

yes it is getting there thxs to people like you xx

Reply

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

Reply

This is all fantastic news.

Dave

Reply

Yes, good news all round! MaryF

Reply

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!

Reply

Well done Emma, I bet it's good to hear when your efforts have had such a good impact. :-)

Reply

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

Reply

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

Reply

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

Reply

You may also like...