Hi everyone, I hope you are all as well as can be expected. I especially hope that those that are housebound due to the sun like me are ok and not going too crazy.
Sorry I haven't posted in a while..I and another 10 day admission to hospital which set me back somewhat but ai have been reading lots of posts.
I have recently learnt about the sunflower lanyard scheme. It's a scheme whereby you wear a lanyard with sunflowers on to indicate that you have an invisible disability. Lots of hospitals, supermarkets, airlines and train companies are using them and their use seems to be increasing. The trouble is I have no idea how to get one. Any ideas? Paul_Howard do you know how we can get access to them? I think it's a brilliant idea just as long as people know what they mean.
Thank you!
Written by
happytulip
To view profiles and participate in discussions please or .
My father used the system last Year. As I recall, my mother emailed ahead to the airport (she googled the contact for this dept) then, when they arrived it was all ready for them as was the support - wheelchair, escort, baggage handling etc. She said it was brilliant.
Lovely hearing from you ht but sorry you've been in hospital again!. Awful how it sets you back so much. Hope your feeling better each day. I've noticed my local Sainsbury's has this scheme!. It's such a good idea. I guess you ask in the individual store how to get one!. Lovely how slowly things are changing for us with hidden disabilities, about time too though!. Dare I ask how it's going with the steroids?. I hope your hospital admission didn't ramp them up again!. It's a tough, never ending cycle!. I've managed to get down to 5.5 mg with the help of Hydroxy!. Feeling pleased because I've never been on this dose before!. Do you take Hydroxy too?. Do you get side effects?. I want to stay on it as it's helped but finding the side effects tricky!. Always something!. TAKE CARE and be as well as possible. Xx
We're planning on including an article about this on the LUPUS UK website and in the next News & Views Magazine later in the year. At the moment you can request one from Heathrow airport if you will be travelling with them in the next six months. Email them at special_assistance@heathrow.com and be sure to include all the following information:
Full name (including surnames)
Departing / Connecting or Arriving terminal
Flight number(s)
Postal address where your lanyard will be delivered
Number of lanyards are required
You can also collect one from Sainsbury's and Tesco stores that are currently trialling a service for people with one.
A small number of charities are enrolled with the scheme and I'll be investigating whether we can get our own supply at LUPUS UK to send to people with lupus by post. I'll keep you all advised.
Thank you Paul. I knew you'd be on the case. I have also learnt that you can get them from PALS at Guys Hospital. I wish I had picked one up when I was there. I have written to LNER to see if they will send me one. Fingers crossed!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Issues ordering Lupus Book from Lupus UK
Update from appointment 
Raynauds swallon and red and ache like heck
Very Achy Thigh and Knee Pain !
Please share your weirdest/ most offensive mis diagnosis!!
