Hi all, hope your all ok during a gloomy January!!!
Ive had a call from my opticians today regarding a case study request in to my eye problems, ive just been diagnosed with Snow vision at a new appointment with the eye team in London. I spoke to my optometrist about it and she's never heard of it before, so shes been in touch with PR to raise awareness of eye check ups and asked me to be involved!!!!!!!!!!!! After my strokes/eye problems/journey around the system im only too happy to try and raise awareness of it all-and hopefully get some awareness for hughes at the same time - so look out for me guys in the paper, its going to be national and local, im practising my photograph pose, were i look deep in to the camera with a glum look on my face for sympathy,theyve promised we i wont get papped without make up on! xx
Written by
emmaj
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Well done, that will certainly help and awful lot. Great that you are going to be involved, also you could ask Kate Hindle at the charity for some information/leaflets papers etc which might guide them also advice on media issues. Also on here as KateH. MaryF x
Ive just really replied in a questionnaire format to PR at the opticians,with plenty of writing about Hughes incorporated where i could - il send an email with our details and see if in training for optometrists can look at the leaflets
Well done Emma I think this is an area which is extremely important for Hughes/APS - clots can also be picked up from looking in the eye too, and it's important that anyone taking hydroxycloroquine should be checked yearly to look for any macular degeneration.
Please do put the PR department in touch with me as I have a media factsheet at the ready, which gives them the salient points: kate.hindle@hughes-syndrome.org. It's quite useful as journalists can sometimes get the wrong end of the stick - I've just received an article from a local Cumbrian paper where they say HS "affects the blood's ability to clot" - not quite the right way round!
Good luck with your awareness campaigning and I'm always here if you need anything - look forward to seeing your splash soon
Thanks Kate, im hoping they take the lines of hughes causing my eye problems,rather than only concentrating on how good they are!!x
And that the story is good enough to take through, sure it will-ive been a case study every time ive been in to hospital so ive done my fair share over the years but im really hoping this gets to the papers x
Thanks Dave, every little bit helps!! Im thinking actually of getting some leaflets done,and distributing them to other opticians now, in a recent hospital stay i was shocked how little even consultants knew about hughes,and even a heart consultant had never heard of it,yet it can affect every organ-surely in such a big organisation like the NHS it shouldnt take years for info to filter through like this-why isnt it incorporated in to training/updating sessions like other things are? The eye ospitals and opticians is just one way,yet there are so many other ways to go - lets keep our fingers crossed x
I think the charity already has some leaflets... and having a service such as you describe is good, my local one is also good, the head person there always does my daughter's tests every time fully aware of Plaquenil, Lupus and also Hughes Syndrome/Seronegative Hughes Syndrome, a very well read woman, who I was delighted to come across. MaryF x
If you get those leaflets on here i can print them for here in the N.H. area- i have my eye's checked every six months because of the hydroxy i take per/ day. but i ca
That would be good hun,not too sure if ive explained it right so i will forward the draft to you, i sent a very lengthy email,focusing on hughes and im really hoping they will take the hughes approach of it causing my strokes rather than how good they are detecting it from a opticians appt x
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I think this is an area which is extremely important for Hughes/APS - clots can also be picked up from looking in the eye too, and it's important that anyone taking hydroxycloroquine should be checked yearly to look for any macular degeneration.
Help please, What do I ask my GP now?
Haematologist still says my migraines have nothing to do with APS/Hughes
My consultant has taken me off warfarin.
Prayers and hope (for self testing)
