Hopefully in the future, all hospitals will have knowledge of Hughes Syndrome

Our drive to build a data base of those individuals and teams with working knowledge of APS will one day perhaps cause less events like this: This is in my area, and I am busy tracking her down!

eadt.co.uk/news/felixstowe_...

Mary F

11 Replies

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  • Gosh MaryF I hope you find her.....sounds like she's had a tough time and really needs to be in contact with someone in the know from here......defo think she has sumat like hughes going on there!!! Can't believe the docs can't find out what's causing the strokes a simple set of bloods would maybe give them the answer in someone so young......ach well what do we know eh??!! ;) Sounds like the benefits system down south works slightly differently from up here in Scotland......I did my dad's paper work & here the benefits for housing/council tax get paid to the landlord/housing place direct so there's no chance of being evicted from arrears tec. so there's a huge weight off renter's minds......(unless your anti-social of course!)

    Good luck with your search MaryF keep us posted :)

  • You would have thought that someone would have at least have put the poor lady on some sort of anticoagulation at least to prevent the recurring Stokes! Poor sole she so needs help not bureaucratic nonsense!

    Well Done for trying to help her please let us know the out come. x

  • This is a terrifying story this poor lady and her children. Where is the father I wonder? Social Services should be tracking him down and making him contribute to lookinf after the children.

    I hope you can find this lady and help her Mary. If you do please tell her we all care.

  • Yes already on the case, we should be welcoming her on board soon. Mary F x

  • I cant believe what I have just read, that is terrible, that poor lady and her children. Do hope you manage to find her, let us know wont you?

    Thanks Sara

  • Yay, Mary. <3

  • It is so frustrating!!!!

    I know you will do right by her & send her in the right direction.

    Our thoughts are with her & I hope she gets the help needed soonm

    Well done Mary xx

  • What a horrible nightmare! The woman and her family have been through so much. I can't believe she is being evicted with no place to stay. I hope there is something that can be done to help this family! I pray they are actively searching for the cause of the strokes and preventing another one. Maybe she is serronegitive if the Hughes testing was negative. This article is terrible they make it sound like she caused her strokes so she can't be helped or

    Something. They should walk in her shoes.

  • Yes, I am trying to do something about my particular geographical area! MaryF x

  • Hi Mary,

    Just wondering how this turned out? Did the woman get the help she needs and has she indeed been tested for APS yet? Anything we can do to help?

  • I never heard back, we had a telephone call, as the newspaper forwarded her my number: I then sent her all the information by email, did not hear back! However the information I gave her included this site, plus also local contacts at the hospital and also in London... she may well be on here, and being private having arrived in such a dramatic way! Also as you know not everybody loads up their geographical area. Maybe she has too much to cope with ie, children and housing... but at least we were there for her, she was very pleased that I had tracked her down and was going to use the information. Mary F x

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