One new small angle on raising awareness for Hughes Syndrome

From this point onwards, every time I am in hospital either for myself or the children, I am taking the trouble to write a review on NHS Choices. Mostly I am able to write very good glowing reports on the treatment we receive. However whether good or bad, I am weaving into the feedback each time, that I would like the staff on the ward to view and have access to the Hughes Syndrome Charity website which I add in as a link. Each time this is published with the link. Perhaps if we all do this, more staff in the NHS will read up about it, as feedback does go to the area concerned in the hospital for the staff to view. Having just come out of my local hospital with my son, I was able to give a glowing report and write the feedback accordingly. MaryF

18 Replies

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  • Hi Mary,

    Yes we must fight from all parts of the World to get this illness known among Medical people. I talked to my Ofthalmologist the day before yesterday and he had another APS-patient who had come from my hospital also. I was a bit surprised. I have never seen an APS-patient face to face. But I will change that soon ......

    Please give my regards to your son also!

    Kerstin.

  • Good job -- I talk to each and every medical person i encounter .

    I have a visiting nurse that i was seeing 3 times a week for my foot rot { still a battle unfinished } now she comes once a week to check for healing and to order my Duoderm and my Tegraderm the Cavlon wipes and the silk 2 inch and 3/4 inch tape i need to dress my left foot ANYWAYS i talk to her about it and she has shown an interest-- i also told her in 10 years if she starts learning now they will be so a head of the game --I tell all of my nurses and Dc's the same thing . I also bring them info from here and all the places that i get it.

    This is a good thing and a must for us all

    so I say great job guys and i hope to some day see your work on this kerstin. I am sure you did FANTASTIC .

    Hugs to all Casey and i

  • Good for you. MaryF x

  • Hi there,

    It is not published yet and it is in Swedish. It will take some time. A paper only every 3 month. I will sure tell you how it goes.

    I admire your optimistic attitude to everything and also our life with this illness. APS attacks some of us very hard and you have had a tuff period now. I know that. Absolutely time to feel better now!

    Hugs to you and Casey!

  • You are so good for me --chasing INR again back to the 3 day tests--we don't change my dosage much if at all But we make sure i am not plummeting or like i am now climbing high -- I am not a bleeder but if low i am a clotter -- when i was in the hosp. in may i developed two DVT'S in left leg .and constant shallow vein clotting that happens all to often.

  • I realize that your reply is from a year ago, but I was wondering about "foot rot." Do you / did you have a wound that appeared suddenly and got worse despite various attempts to get it to heal? My wife has had an open wound on her foot that started June of 2014!

  • yes -they did all kinds of tests had 4 specialists working together on this but they couldn't stop it.

    All topical meds didn't do anything but make it worse.

    I could open then wound up and see the heel bone at first - I was finally hospitalized and this ultra strong anti IV med {of which i had a reaction to and had to be sent down for an emergency CT scan . but made it thru .

    I used TegraDerm and Duoderm , silk tape and an artificial skin that had treatment on it - i changed bandages every three days. It took more than a year to heal.had to keep it dry at all times. covered it to shower and hand wash feet to avoid any moisture getting on the wound.

  • Thank you. I'm glad that it healed eventually. Were you able to walk on it while healing? I've asked about EpiFix, but the doctor says it's too big for that.

  • I was able to walk on it i had to have Orthotic's made to make sure the pressure wasn't on it and i still have to have them $600 , Insurance pays for most .and they last about 7 months and then a have to get a Dr's script for new ones . i get two pair - one for my heavy boots and a pair for my hikers{which i wear the most .I can never walk around bear foot, anything to cause a cut has to be avoided at all costs -- they were talking amputation in may of 2015. that hospital stay was last resort.and it still was a year after that . hope yours heals Time and causation were major things for me.

  • Yes, my wife has an "off-loading boot" to keep the pressure off it while walking & standing. At this point the wound seems to be stuck at about 4cm by 2.5cm, oval / pear shaped.

  • Thank you, best wishes to you also. MaryF x

  • That's excellent Mary as nurses at my doctors have never heard of it before.No other patient at my GP has it so they must read up about it

  • well of course we can politely review our GP surgeries via NHS choices, kind, calm and informative feedback with the link attached, will help us all. MaryF

  • I live in Israel and the situation is different. Everyone has an insurance and APS is in the computer of the insurance. If a doctor doesn't know what it is, he will read a basic explanation of the disease on his computer.

    I haven't seen a doctor who doesn't have a basic understanding of APS.

    From what I read on the forum, I feel that the situation here is very good

  • I am glad to hear you have confidence in the care you are receiving. Best wishes MaryF

  • if their understanding is in fact correct. what i have found not all of them get it straight. My opinion.and experiences.

  • Hi David,

    That sounds fantastic!

    May I also ask on what therapeutic level of INR you are (if you are on Warfarin) or what anticoagulation drug your Specialist has decided for you to be the best?

    I live in Sweden and Israel is not common either on our site.

    Best wishes from Kerstin in Stockholm

  • Yes hence the post above, luckily lately, I have just been able to write good things, but I always put a link to the charity in the feedback so staff have to read about it. MaryF

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