just a thought but we all got so much in common and one thing that strikes me is a lot of us suffer miserably from the less published side of having APS eg fatigue, muscle pains etc and as a large representation if we designed a questionnaire to gain feedback with a theory if someone who is good a writing or has written for publication before we could follow the format required and publish our findings...
i did do a smale scale study many many yrs ago which meant i approached the ethic's group, designed a questionnaire then i looked at the health and safety issue related to safe disposal of mercury (nursing then i was alarmed that few people were aware of the dangers and knew how to dispose of mercury safely after spillages) it went on to change practice at trust level not just ward level which was the original reason for a group of us looking at a practice to change...
equally here we need more recognition where we can demonstrate how anti coagulation at the correct level does effect us - as the majority need inrs kept higher than the recent recommendation of 2-3. Kate Hindle perhaps could shed light on if she thinks this is feasible - how to go about it - getting the evidence would be using the polls - need to look at design - perhaps look at the association with other auto immune conditions - the list is endless but we need our voices heard in PRINT
any thoughts kathy xx
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This is a good idea....I did the symptoms olympics post to define what we all actually seem to get....which we could perhaps refer to or use too?
I'm in if you need anything plus once we have a finished product we could all perhaps put them in all our local papers?! just a thought....hit eveywhere until the word gets out there to help others! xx
Great idea, with a bit of lick this could lead to proper clinics dedicated to aps - so with all the different areas of the body that are affected we could see one specialist instead of many different ones!
thinking back to when i looked at research you either did quantative or qualitative so i looked it up and qualitative is a property that can be observed but not measured numerically
Qualitative research, featuring a high degree of subjectivity
Qualitative data, data that is not quantified.
So the information we will gather will be qualitative do you agree? I will look for information on writing up a study to guage how we can structure it :
we have to write our theory so need to look at our evidence and present it - that is a good idea re the symptom olympics - and as you say eagle look at who willl be our target audience - my thinking is to get the format for different journals - ? medical / nursing rheumatology journal might be a great place to target
just brain storming - if that is political correct to say of course
off crutches, use cane- named it [RASIN ].. yesterday had to call in my visiting nurse , had a bleed start in leg on inside right knee , this is one of the things that concerned them with me , went to doc;s that was a wash , as swelling had gone down and bruising had stopped and blended with the other discoloration present. i'm off enox for yesterday, and cant take anymore till i hear from hemo- dr Ornsteins office today ? this morning looks better, but purple bruise back again. tried to ring you this morning - no answer - Suzy has got me concened , rang her - no answer :-(- will try you both later ---------------- the purple gimp
I think this is a terrific idea!! I was just discussing all the similarities to my husband and GP on Tuesday. Little things that you wonder about and might be dismissed by docs or myself as being associated with APS. I'll be more than willing to contribute! Thank you for taking the time to post! Xoxo to all
I'm in anything to educate more especially about the painful side of aps which is not recognised by many. I also thought about all our stories collectively put together for a book.
Brilliant well done I remember the mercury changes what a difference from putting a thermometers in patients mouths,to then being despised of in a very strick way.What a difference!
Gosh if we could do that with Hughes syndrome it would be fantastic.If I can do anything I would be more than happy to help.
At the moment i have got the printer ready to print off the Hughes information from the Hughes syndrome web site to take to the local hair dressers.
Just last night I wrote the Email down from a couple of magazines justnow waiting for the surge of energy to kick in,
My Neice has just got married her father in law, is I think the editor of local paper so when she gets back from honeymoon, will give her allthei formation
Hopefully he will put something in the paper again
It is becoming more obvious that I am having problems with my memory so need to do something now. How diffenent things could have been!
This is such a good idea and I feel essential to the future care of APS patients.
I have been saying for a long time that too many articles by, even Prof. Hughes, seem to suggest that anticoagulation is the panacea for all symptoms of the illness. The recent one in the Telegraph, which was a good little article, suggested that anticoagulation had 'dramatic results on symptoms'.
If this is the case what are we all going on about? I am on daily clexane but I feel ill every single day of my life and my symptoms are getting worse not better!
If the powers that be think that thinning our blood will make us better then it makes it harder for us to get help with this dibilitating illness.
I did a lot of writing and presenting of talks in the past, if I can help at all I would be delighted.
Suzie's symptom olympics was a good eye opener into what we all suffer on a daily basis.
Hi everyone, I run a research organisation that conducts all sorts of qualitative and quantitative research including surveys. I think that we need to think a bit bigger! If we did an e-survey of members of the group that could be written up as a report, illustrated with 'snapshot case studies' by which I mean half a page to one page giving the human side of the findings that would be a really useful piece of research from which all sorts of things could cascade including various articles aimed at different audiences. I am happy to offer my services to the group.
wow the response is fab and i believe we all are intelligent people experts in our own bodies & conditions and could offer a wealth of information that written and formated correctly could open the flood gates as Dorothy says collectively we could make a massive impact to the much needed gap in the research looking at what we suffer with daily that often gets fobbed off or not linked to APS.
then present our findings ourselves at the next patients day in london and all over the world where similar conferences are held we too can go global!
APS in particular for me i have always been analytical know that i need the information to be written sycinct but thats where i struggle - in my 30's i struggled a bit but did get the evidence and format written with help and accepted then for publication but these days i get frustrated my brains so foggy and i seem to go the b roads not the motorway so Dorothy you sound the perfect solution and yes please could you conduct us on this exciting journey so we can start to be autonomous and listened too collectively kathy xx
I am happy to work with you guys on this, I think it is a fabulous idea. Give me the weekend to think about what we might do and I will come back with some ideas sketched out. Dx
Absolutely fantastic if you could help tie this together, although I have lots of ideas and a long story to tell, just struggle so much with cog-fog, I get so frustrated when trying to put things together. Thank goodness for spell and grammar check on pc's etc.
I used to be so articulate, had to take a break part way through my degree, hoping things get back to normalish, so I can complete it!! Had completed course in Autism and 2 maths courses when had to stop!!
Your ideas sound brilliant and we really could make a massive difference the world over!!
Just tell me what to do and I´ll do it !!! I think is easier for me to colaborate whith you in UK than promote a study here in Spain.... (still fighting)
It`s a great idea. It´s just what I need: evidences.
My docs don´t believe me with my simptoms, they say all i have is depression because according to them our illness only cause thrombosis and prescribe medication for depression. I DON´T HAVE DEPRESSION!! I HAVE APS!!!!!
But if they continue that way, now is when i'll get depression....I too sad and frustrated today after my visit. I`m happy but everytime i go out after visitting docs....horrible
Hi Swirl me to hun my GP said i was depressed!! just had letter back from neurologist it has flaws in it he is supportive but it seems he now dont believe i had multiple tias because my mri scan showed no stroke etc - but im sure i read tia's dont necessary show up on scans so bit confused now... also he wrote that a doctor i saw last august added aspirin aswell as my warfarin- but he must have a short memory or overworked because he put me on it back in feb!!! because of the tia's he saw me just after i had an ecg for chest pain pain in left arm that swelled then went cold - all odd but was glad had a visual symptom as again one doctor i overheard him say to a nurse my problem was due to anxiety nil clinical but no mention of the left bundle branch occlusion in the letter it says sinus rhythm, makes u wonder why they bother doing these tests if they take no notice of the results and clinical picture!!...
oh well think positive we will have our say soon...
you certainly dont have depression but as i put in my letter to complain of my gp his attitude and general lack of understanding would certainly drive anyone to it - keep strong swirl just remember you know your body and how you feel and these so called doctors are ignorant and lets hope they will learn to listen to there patients...
at the patients day in london, prof khamashta mentioned an expert in spain who is part of the apsACTION group perhaps kate hindle can find out where he is based in Spain so at least then you will see an expert in APS - love kathy xx
Kathy, sounds to me like your GP might be depressed or have brain fog -- or maybe a series of TIAS which have not shown up on his MRIs.
The explanation I was given -- by the EX GP who discounted the neurologist's suggestion I had APS, was that TIAs by definition leave no MRI scan evidence. If the MRI shows a dot, then it is, by definition, a mini stroke no matter what symptoms the patient had or has.
(Of course, the MRI that was done that week showed I had dozens of dots which looked like abandoned spider webs all over my brain. That REALLY sent my GP into a tizzy trying to justify his "it isn't APS" argument.)
So --my take? Whether it is a TIA or a mini stroke is in the eye of the practitioner-beholder.
So . . . this projected article or book: Are we writing for professionals? or the general public? or an amalgam of the 2? I have only recently been reading Dr. Hughes book on The Syndrome so his format is in my brain. I find my mind running in his "copy" mode. But I bow to the professionals' superior judgement.
I'm excited about this project (does that mean I'm depressed? or hysterical? or a hypochondriac? or spending too much time in front of the computer since I'm not hiking as much as I used to?)
Published writer here! Would love, love, love to help with this. My latest articles were for the Oxford Press in a kind of 'hip' history book. *please buy it, lol* and I just finished my Master's Thesis....this is a genius idea. Love it.
Well, I have historically been known to become a little hysterical when it comes to explaining how, and what, I am physically feeling while I agonize from this debilitating condition...And, it makes me depressed, that I have to keep things compressed, deep down inside because of APS. But now, I am completely impressed that every one is happy and excited to collectively contribute information to this collaboration of sufferers, so that we may finally be heard by the medical establishment!
So, Kathy, I continue to keep how to organize such a book in the back of my mind. By patient story? by symptom? by mis-diagnosis -- eg, "they told me I had _______, but actually I had APS?" I agree it will necessarily be a book based on qualitative experiences, but how to arrange it?
Dorothy from Italy runs a research organisation and has offered to help us - she is going to think about how to best format this over the weekend - so when she has come up with a plan of action basing on how research gets published i thought we could all then have our say whether it will be by global e survey, or with a collection of all our experiences im not sure - then like you suggest a catchy title - im thinking we need to move this now so only members can view.
Having off weekend ;-( which has enforced the need to do this - each specialist i see firstly do not do an accurate account in the letter post clinic... so there are flaws and innacurracies that dont necessary reflect the verbal support - my latest letter has dragged me down as i really feel unable to work at present due to my daily battle with this disease and its manifestations like Mrbigdog comments above i am also compressing my emotions to their responses as i feel extremly low today reflecting on the letter and what was said BUT becoming depressed is not an option for me then i see that they have WON when the bottom line is depression becomes a by product of thier attitudes and lack of understanding at a time when we so often doubt ourselves we dont need anyone else doing that ;-)i feel from my personal experience i adapted a coping mechanism that kept me from drowning the label fibromyalgia and my GP's perspective on that condition meant i have had my head held under water fighting to resurface!! i can take deep breathes and sighs see progress at times to then have a response of negativity when for me with this conditions it is hard to get anyone to listen and more importantly carry out appropriate investigations - once considered anxious the medical team then see carrying out test as a waste of money and research and gp guidelines by the government says you only feed someones anxieties by carrying out unnecessary tests!!! with APS we NEED these test so straight away we are running up hill once again - our energy we need to cope with the !!!
complexity of this disease not fight dinasours disguised as medics who belong in JURRASIC Park!!
this site has kept me sane and the support on here is invaluable to us all - so we owe to ourselves and others out there to get listened too - i am fed up and really peed off so whether the medics like it or not i email the secretaries (written proof then) if i have concerns and my rationale and logic on things i use to worry about what people thought of me - now i dont care its my body i could drown in booze smoke my self to death or take drugs or through comfort became fatter than i already am BUT I WONT i simply want to be as healthy as i can to give me a fighting chance of a further 20 yrs without stroke or further ill health that renders me dependant on anyone!! long rant but it keeps me sane writing it kathy xx
I am a current psychology degree student and a wannabe writer so I have a little knowledge of research project write ups (very similar to journal articles) and I can write a bit. I can see there are many far more qualified to do this but I will support in whatever way I can.
As an APS sufferer my history goes History of migraines since age 12, DVT at 16, miscarriage at 18, couple of early miscarriages in early 20's, late miscarriage at age 27 then diagnosis. Begged for referral to Haematologist even though recurrent miscarriage clinic at St Mary's told me I didn't need one. Got to see consultant at St Mary's and asked if I should take aspirin, got told If you like!! (been on aspirin ever since )
Hi everyone, just to let you know that I have I have got in touch with a couple of people who are planning research into APS to ensure we don't overlap with their plans. I am also looking into the national ethics position for research in this area.
My thinking currently is we need a simple e-questionnaire that members could access via a link. The questionnaire is completed on-line and then when the submit button is hit it comes back to me securely, thus ensuring confidentiallity of response. I can then analyse the survey results. At the same time, those who would like to can prepare anonymous short case studies that can be used to illustrate the report, following a set number of headings. These would need to be edited by me for consistency (for example in terminology).
HI all I would help with this, I went to my GP yesterday with several issues, i took a print out from this site with me, for the 2nd time to see if he would read it, it was explaining that APS patients INR levels need to be higher than normal patients and for the 2nd time he told me he didn't want to read it. I had also mentioned if I could get my INR to 3.5 my migraines may be become less severe or even go away he said - I wouldn't count on it you'll just have to tough it out. my INR is currently 2.3 which he says is perfect!!!!,
Hi Kelgem your frustration is so common one i too have battled with but did get it agreed that my inr would benefit me from being higher i aim 3-4 but higher end i notice more of a difference.
Go into prof Hughes blogs there was information i printed off here and sent it to my haematology lab and keep in my file stating the need for some patients requiring a higher inr not 2-3 when neurological symptoms are an issue eg your migraines have you tried a different GP in your practice? i eventually moved gp this year and it is amazing how the difference in support helps you cope.
Hi Kathy, count me in too to help in whatever way you feel would be of assistance. I was a Senior Lecturer at a University and undertaking MPhil (until APS came along) so am au fait with research methodology.
I, too, am mystified why textbooks make so little of how awful APS can make you feel, particularly the fatigue, so would be delighted to help with producing any information which would help to correct this.
Hi Linda welcome aboard and wow you do come highly skilled excellent Dorothyitaly will be undertaking the project she too has APS and 26yrs experience working in the research field. You will be interested and au fait with her comments in her blog... "it was getting a bit confusing with several blogs discussing this so she started a fresh" see you over there will look forward to your input - together i am confident we can bridge that much needed gap in the research! kathy x
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but i will do what i can 
Has Prof Hughes posted a page somewhere that we could refer A&E people to for a brief synopsis of the condition?
How to Heal Yourself
A very worrying reply from St Thomas' about the discharge of hundreds of patients.
