A bit of good news re publicising Hughes Syndrome.

[stillwaiting]

When I went have my INR checked at the GP surgery this morning the nurse was telling me that 3 of them had gone on INR training last week. There were INR practitioners from all over the country and Hughes was covered in the course but not many of the folk there had come across Hughes patients so "my" nurses used me as an anonymous case study/example. I was pleased that they had helped to raise awareness on a practical level and thought I'd share this mini ray of light here

L.x.

PS INR was 2 no wonder I feel as bad as I do - no sprouts for me for tea which I had planned!

[Manofmendip]

Hi

That is very good news that the training course involved Hughes/APS.

As you say no sprouts this evening. They are little Vit K bombs and 4 of them would lower my INR from 4.0 to 3.2 overnight.

Best wishes.

Dave

[MaryF Administrator]

Hi there pleased to hear about the awareness going on, even if the sprouts are being kept under lock and key! MaryF

[loublou]

Pleased .....I hate sprouts x

[Hidden]

thanks for sharing, I was having my INR checked by a new nurse just taking on the role and she had never heard of Hughes, so hopefully things will change. I take Warferin for AF but have been taking test for possible MS which is proving inconclusive. My mum had Hughes and my sister is being investigated for Hughes but my Nuero thinks my symptoms do not fit Hughes (sounds like a poem lol). He has finally tested me for Hughes and awaiting blood tests, this is after 9years of symptoms and permanently have now lost hearing in one ear, deterioration of eyesight, vertigo, dizziness, left sided weakness, loss of job which led to us having to sell allsorts including our house etc I am not sure if I will be pleased of a positive result to this test or fuming mad at the NHS.

[stillwaiting in reply to Hidden]

pleased or fuming mad - I know the dilemna well and have probably felt both in equal measure. the important thing is to get an answer and a care plan. I wish you well Tell us how it goes.

L.x.

[GinaD]

Regarding sprouts: the sprouts they sell here in the States in the produce section has been found to be bad for people with SLE. Something in them can rouse the disease,

Made sense to me and my sister as we realized that the scary SLE symptoms we both had when we were younger was related to whether or not we lived near, and shopped at, a grocery that sold sprouts ( which we both enjoyed.)

[Hidden]

This is so encouraging Awareness finally seems to be growing particularly amongst anticoagulation clinics and midwives - we've just got to work on everyone now ...