Has Prof Hughes posted a page somewhere that we could refer A&E people to for a brief synopsis of the condition?

[WayneL]

My wife suggested that as we all have had drama's at A&E, there should be a web page / site that these people could look up to confirm that YES< WE DO EXIST and also that we're not mad!

Perhaps, there should included a facility where the A&E doc's could ask questions and get advice on treatment or meds for control of presented symptoms?

Also, a large font red, flashing message that reads ÄPS patients are not nuts and need medical assistance, NOT PSYCHIATRIC!""

[SassyOne]

Lol there have been times I have thought I was crazy having these phantom symptoms that never come up on any test. No one can 'see' your pain or how your feeling. I am relieved to FINALLY have a diagnosis that explains almost all the crazy medical problems that they could never find a cause for.

However, NO ONE HAS HEARD OF APS! Wane that is a great idea! My last trip to the ER:

I had a headache, blurry vision, nausea, and dizziness. When my right hand went numb I left work mid-shift. I went to the clinic, I didn't realize i was missing a few marbles until I tried answering his questions. Things I should have known. He sent me with an admission form for the ER & sent me to the hospital suggesting TIA.

I waited a few hours to be seen as I didn't have high blood pressure (it was low but I can't remember how low) the dr said if I was in my 70's he'd have given me a scan. He'd ever heard of Hughes, Dr rolled his eyes & told me I just have a migrane, gave me a shot in each cheek, one for pain & one for nausea & sent me home. I felt sick for a week from my 'migraine'. I had never heard of a Tia.

[WayneL]

Hi, Lynn.

Whilst I have not personally experienced the above type situations, I have witnessed enough of the whilst accompanying my daughter to hers.

She has a Medic Alert bracelet, but I'm sure that Prf. Hughes wouldn't appreciate a long distance 'phone call at some ungodly hour of the morning by some nit-wit A&E medic asking about this strange disorder my daughter "supposedly" suffers from?

I'm sorry about the humour, but after reading sooo many accounts of the 18th century attitudes , I couldn't help myself.

I just had to say something,and with a little (very little) encouragement from my dear wife, we replied.

Thanks for the rant and I hope you got a laugh from it as well.

Wayne L

[MaryF Administrator in reply to WayneL]

Humour is great and also is a great tool for disarming... I was recently asked if I was likely to make a complaint about a certain teaching hospital having really messed up with my daughter's results... which was awful... nothing wrong... they had got the paperwork muddled up, she has SLE and Hughes... I said to the rather surprised person on the end of the phone, having spent ten years jumping through burning hoops with my pants on fire to get in there, I was rather reluctant in the first month to shoot myself in the foot etc, Mary F

[joyB]

I carry books and leaflets, obtainable at the Louise Cootes Unit, with every time I see a new Doctor. My GP,s are now very APS aware and although I was the first they now have several patients with diagnosed APS and Coagucheck machines.

[WayneL]

Hi, Joy.

I guess being informed about your own condition is the best defence that we have when it comes to getting proper medical care.

The situation in Australia is, I fear, very much the same, with the exception of places like St Thomas', where treatment along with research, is going on.

[Hidden]

Hi Wayne

You'll be pleased to know that the HSF has received a grant for £10K from the National Lottery and I am in the midst of rewriting the entire website. I have finished the Symptoms section with approval from our medical panel and am now writing the new Self Help section which will have printable fact sheets for these situations and more. Paddy has been very helpful giving a patient's perspective so I'm hoping they will be really useful.

However, I am one person and will be writing this for some months to come - the designers are great and giving some good ideas but it's still going to take time. The launch should be in the autumn sometimes as son as there are no unforeseen obstacles.

I should point out that Prof Hughes is really a figurehead now and the information from the charity comes from a medical panel made up from world expert advisors. We're very lucky to have them all

[MaryF Administrator in reply to Hidden]

Great news - let me know if I can help in any way. Mary F x

[Hidden in reply to Hidden]

Fantastic news Kate keep up the gud work xx

[bernieembleton in reply to Hidden]

That is great news Kate. The greatest battle is getting the information over to medical staff, and getting them to understand. It can be exhausting, having to explain all the time, especially when you are having a bad day. I went to a pain clinic today, for the first time. I saw a psychologist in the team. Before i gave him chance to get into conversation. I asked him if he knew anything about my conditions. I thanked him as he had taken the time to read up about them. It was a positive appointment for me.

[WayneL]

Hi, Kate.

This is really great news for all of us, patients and carers alike.

To be able to go to a hospital armed with information that has been collated by medical people will be indeed marvelous.

If it saves just one of us from having to go through the frustration of having to explain what the syndrome is all about ( and its complications! ) to yet another medical professional, it will prove itself to be invaluable as a resource for all.

Thanks,

Wayne L

[Stella]

that is marvellous news and thank you so much for all of your hard work - it is much appreciated! Once it is done. Perhaps we could all buy card via this site, which could direct medical staff and others to the website. By the way I often read all the blogs etc but don't often reply as I don't necessarily have anything new to add. However, I find it really reassuring to know there are other people who understand out there. Stella

[Hidden]

It's good to see that our Fact Sheets are worth doing There will be sixteen in all:

• What is Hughes syndrome and how does it affect you?

• What are the symptoms of Hughes syndrome?

• Pregnancy and Hughes syndrome: current advice and information

• Diagnosis: how to get tested

• Treatment and medication: current advice and information

• How to inject yourself with heparin

• Talking to your doctor: how to get the best from your consultation

• Visiting the dentist

• Going into hospital: recommendations and advice

• Associated conditions: the autoimmune family of disorders

• Living with Hughes syndrome: what you can do to make your life better

• Travelling: advice and tips

• INR and self testing

• Family and friends: helping people understand your condition

• Medical identification: what to carry in case of emergency

• Employment and benefits: advice and support

I have almost finished them but am busy with the Patients' Day at the moment - it's amazing how difficult it is to pin speakers down!

Thanks for all your encouraging comments

[WayneL]

Hi, Kate.

Thanks for all your hard work and dedication are very much appreciated by all of us here.

I am certain that they will be very widely used.

I also like the card idea for future appointments at places like Hospitals, etc.

It would relieve so much anxiety about having to explain things over and over again, and not being able to communicate exactly ( or as exactly as we are able )

what is happening to us at the time.

Thanks, again.

Wayne L

[Tomcat]

I know it's not really related to the question but just thought I'd let you know how Indignant the Consultant was who diagnosed me, he was beside himself over Dr Hughes naming this condition after himself, thought it was rather funny at the time.

[jessielou]

Hi tomcat

a group of his colleagues named it Hughes syndrome to honour prof graham Hughes as he put it all together. Maybe your consultant like Some others have huge egoes don't they?!?!?

Take care gentle hugs love Sheena xxxxxxx

[WayneL]

Hi, Tomcat.

Jessielou is right when she said the Syndrome was named in honour of Professor Graham Hughes.

I am not surprised by your specialist's re-action but really!

Maybe they should consider what he and his colleages found during their research and the hope and help it has given so many others.

if not, what are they practicing for?

Wayne L