Sticky Blood-Hughes Syndrome Support
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interesting find

Hi all, new here as although I have had a diagnosis of APS for 8 years I didnt know it also went under the name of Hughes syndrome. it was only when looking if APS was defined under the Disability Discrimination Act for purposes of work that I found it. yippee.

my story, well not to be too disheartened, I have had 4 multiple P.E's and 1DVT. the last occurring in Sept 14 despite being medicated. it was a huge wake up call as I was blase about the APS thinking the medication would protect me, how wrong I was and after a few months of being fixated on my mortality following the last P.E I have finally come through the other side and I am feeling stronger in myself again.

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Sometimes meds need to be tweaked to just get the right dose/combination of drugs. The more you are informed the better the outcomes. There is no "right" dose or med that fits everyone otherwise we'd all be feeling great!

This is a great forum to browse and get info from.

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Welcome Barb64! I am a relative newbie too, having been diagnosed since January. I promise you will learn more from these lovely people than from any clinic or GP! x

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Hi

Just out of interest did you find anything under the Disability Discrimination Act?

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Hi Molly, it does all seem rather confusing, particularly as it now comes under the equality act umbrella, however I did come across a post from this site from 3 years ago which stated

" here in the UK my conditions Anti-phospholipid syndrome and Pulmonary hypertension ensure that I am covered by the disability discrimination act and so my employer has to make "reasonable allowances" for my illness"

How accurate it is I am unsure but wonder whether maybe the Admin can throw any light on it.

I would be very grateful for this to be clarified as like I said it seems quite vague the information I have found and does seem in many cases to depend on how your employer views it.

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OK lets cover these issues one by one. First of all the DDA has been superseded by the Equality Act. Secondly, you have to prove you are disabled under all the definitions of the Act and that is what most people find difficult unless employers accept your disabled. It is the effects on an impairment and their severity, especially on day to day living that matters.

There is a guide book that helps decide if different conditions will meet the legal definition. Most of this will be around the employers legal duty to make reasonable adjustments which is at the heart of disability law - know because Im dealing with a case now!

So 6 (1) of the EqA says:

"A person has a disability if (a) they have a physical or mental impairment, and (b) the impairment has a substantial and long- term adverse effect on their ability to carry out normal day-to- day activities.”

The Act defines long-term in this context as having lasted, or being likely to last for at least 12 months or the rest of the person’s life. Substantial is defined as more than minor or trivial.

Here is the link to the guide:

(sorry its a google link thats a pdf) Type in "Proving Disability and Reasonable Adjustments Guide" and you should get it as the top search

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Hello barb64 and welcome to our friendly forum.

Just a few questions to help us help you.

Where are you from?

Who manages your APS/Hughes Syndrome?

What medication are you on?

Best wishes

Dave

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HI Dave,

I am from Liverpool, currently my APS is managed through the hospital but I go to a local clinic for blood tests etc. I am on Warfarin and have a target INR of 3.5 although it generally never quite reaches that.

I also have a number of other medical problems such as Fibromyalgia , under active thyroid and chronic arthritis in my back,neck and knees. Still I'm alive, breathing independently so that's a bonus : )

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Thank you for replying.

Have a look at this link to see APS specialists in your area.

hughes-syndrome.org/self-he...

I have myalgia too.

Some people find they feel better when their INR is between 3.5 & 4.0.

Dave

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HI and welcome and thank you for giving us the information, I am glad they have picked up your Thyroid problem as this is commong with Hughes Syndrome/APS and at times the Fibro is down to being inadequately medicated for that. Please make sure that your next round of blood tests include Vitamin D, iron and also B12 as if any of these levels are not up to scratch it will make you feel worse that you need to. I see Dave has already given you other advice.

The charity website carries good information and also several suggested books to read if you are that way inclined. MaryF

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Hi Barb where about in Liverpool are you from, i come from Liverpool.

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Hi Sue, I'm in Liverpool 19. Whereabouts are u

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As Dave is saying it is exstremely important that you reach the therapeutic level of INR to be able to benefit from warfarin.

Warfarin is No 1 drug to feel better when you have APS as it makes you blood thinner. We have actually too thick blood! There are also other drugs coming up nowadays to prevent clotting and thin the blood, but Prof Hughes has said that warfarin acts well on this illness. I agree with him.

Try to learn as much as you can about what to eat and how important it is to eat the same amount of vegetables rich in K-vit every day to keep a stable INR.

I am myself selftesting but I am from Sweden and here it is easier for us to get hold of a machine without big costs.

If it is possible for you, try to get a selftesting machine. The INR can change from 4.0 to 3.0 in 24 hours. Did so for me in the beginning of this week.

Best wishes from Kerstin in Stockholm

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Hi Barb - I have been diagnosed with APS and IPC and I too suffer from itching mainly on my back. At night I nearly go mad with it. I have acquired a back scratcher and get a little relief after a good scratch! I have tried all sorts of creams etc. have not noticed a difference with my Warfarin affecting it. Like you I have had 2 PE's and 4 DVT's! Otherwise am fit!

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Hi Barb Shel again meant to say I have ITP as well as APS. Must have had them for 50 years without knowing as I had pre-eclampsia at 32 weeks and had the baby removed by C section. My baby was 50 this year!! but she too has ITP

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