Sticky Blood-Hughes Syndrome Support
8,095 members8,333 posts

Now is the time to write a book

Dear All

I am so concerned at the plight of the seronegative APS/Hughes Patient, being one of those myself, and quite possibly my children, that I feel alongside other members that it is time to write a book collectively.

There seem to be some who have had a diagnosis and passed tests, only to go through phase of negative testing for a while, or those who have had many life threatening clinical episodes with all markers for the disease minus the blood test results, who have then gone on due to medical decisions to have heart attacks or PE's or strokes or other nasty happenings.

I think a book written collectively with all medical papers written on the subject and clear case histories is the way forward.

Mary F

21 Replies
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Brilliant idea - who are we going to get to do it or co author it....Prof Hughes?

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We need to get contributors, plus contact medical professionals who have written anything regarding clinical symptoms. I am happy to support anybody on here, but the volume of patients being sent off to have their symptoms (psychiatric-ally), assessed if they have not passed a test or have had sometimes only temporary negative results is concerning me. Also I was sure that in the past St Thomas' were supposed to not just go on blood results! Also some people have such hardship they are finding it hard to fund private investigations. In the past diagnosis appeared more sensible and professional.

Mary F x

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Mary I agree wholeheartedly. I realise how lucky I am for the Internet to have led me St T's back in 2004 and a friend with a relative in London who came with me and who let me stay twice at their house as back then I could not have done the trip in a day.

Also as the waiting list was a year back then and apart from hijacking the Prof in a corridor to get to speak to him, I wanted to change from plavix to heparin and a person I 'met' in the net who say him privately and gave him a letter for me which he acted on.

I too am very concerned the way things are going for all of us. Even those of us who are being treated and self testing I am sure one day I will have to buy my test strips and my OH who gets migraine is now having to fight for sumatriptan nasal sprays due to cost.

So in essence I will join you. X

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I think that's a great idea!

MJ x

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This is a great idea. To add to it I thought of mentioning one of the professionals you mentioned. There is a Naturopathic Nutritionist in the U.K. named Linda Lazarides that may be able to offer some input into some of this. I am currently reading one of her books in an attempt to help my wife who has been suffering endlessly at the hands of Hughes Syndrome. She writes about Leaky Gut Syndrome that is quickly being linked to many Autoimmune disorders. Could be worth a look. I will be posting a blog to document the attempt to heal my wife. We are both starting a diet to test for food allergies tomorrow. Good luck to all of you!

-BH

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I will join you. Let me know what I can do and when.

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Anything that helps those in the grey area of seroneg has to be a good thing. Any info/stories you want just let me know!

Hxx.

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definately! i will help in any way - a collection of stories would help also,and difficulties in diagnostic stages. Our journies recorded. My hope is one day NICE will have specific criteria for doctors to follow and GPs andconsultants will be kept up to date with hughes and all other auto immune diseases and the crossovers so we are never treated like hypochondriacs ever again, or left to chance, and if one person is saved the misery of a lost baby then that is worth it alone, and helped before stroke hits and devastates your life forever xx

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I'm going through testing at the moment and I'm terrified the results will be negative. I think there should be a case for trialling treatment even in the case of a negative result before ruling it out.

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definately! I myself was diagnosed by Dr. D,Cruz and then had my diagnoses taken away by another consultant at the lupus unit because although my first test was positive, all subsequent testing has been normal.

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Thank you for all the responses so far. Mary F x

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Such a book Mary would open the eyes of the medical profession.....how wonderful after all you have gone through with regard your own health that you feel able to write a book.

I take my hat off to you.....go for it girl.....you have all the criteria at your fingertips.

Jillymo Ps How fast can you type I am in need of help :-).

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To speed up typing you just need to do a typing programme.. and do it daily for a bit, and it will speed you up. Something like this one: download.cnet.com/1770-20_4...

You just do a bit every day, and practice, and it makes your typing better and faster.. All my children did this programme by the time they were 11 to help them at school... they all type like the wind etc.

Although any one will do. I am fast, although when ill I make mistakes for our usual reasons on here, with migraine and brain fog etc.. but i was a touch typist in the 1980's with a mistake free 95 wpm! So.. at least it has a use these days. Mary F x

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Thanks Mary for the info.....I was playing with you. ! 'basically what i was saying Mary is get those fingers typing.'

This book you are talking of writing is needed to push so many of us forward & it will also help to educate the medics.

I wish you every success with your writing & cant wait to hear of the publication.

I will practice my typing. Jillymo Ps I have mailed you with regard to thyroid treatment.

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Oh ok... sorry, I am a bit slow in the mornings on the uptake! MF x

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i know the feeling Mary i am the same. I am trying to get ready to go for lunch at my sons but this site is addictive & i'm not dressed as yet !

Your blogg this morn was great news....music to my ears. jillymo x

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Count me in! I think it is very important to get across the effect on patient of a poor understanding of derogatory negative. I am pretty good at proof reading too. Ann

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It will be a collective effort, and thanks. MaryF x

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Realised my post not a good advert for my proof reading skills . :-)

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I am pretty good with words, but not sure I am right person to help, as I am Hughes positive and have not suffered at the hands of ignorant medical professionals during diagnoses.

Clare

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I'm in, Mary. I can type pretty well if you need help. I am so frustrated right now. I have so may auto immune diseases but my high levels of steroids keep me looking well fed and not looking sick, so even my own adult sons doubt how much I suffer. It's almost since a clot to my small intestine caused gangrene, subsequent surgery, then surgery again for a terrible secondary infection. Then, ulcerative colitis, legal blindness, etc. I think if I dontget involved in doing something proactive (like helping you with your book) I'm ready to just give up all my meds - stop the coumadin and live or die with the consequences. I've given up on doctors. I'm so sick of being sick.

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