Sticky Blood-Hughes Syndrome Support
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Quitting work?

Is anyone aware if you have to finish your job because its affects on your health, can you claim benefits such as DLA. I'm not diagnosed with Lupus but APS so occupational health dont understand the condition and will not sign me off on health grounds. Im finding the stress of the job is impacting on my symptoms as well as the physical aspects of it too.

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Hello Dee

Who is managing your APS, as they should be providing you with the evidence to present to the benefits people.

Best wishes.

Dave

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Presently I only see the heamatologist who diagnosed me once a year. I am trying to get a referral to a specialist at present

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Where are you from Dee

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I was referred to a Hemotologist after my P.E. He diagnosised

Me with APS. He has me followed for my INR in his clinic and sees me every 3-6 mos. depending on how I am feeling. He was great with me when I had episodes of brain fog. He understands the disease and what I tell him. What kind of specialist do need?

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Hi Lexi. Your dermatologist seems to be great. I am only due to see mine again in two years (not that good). Because I'm having different problems with my health now than I was when I was first diagnosed. I would like to see a specialist in APS so I can get more specialist advice. Can I ask where you see your rheumatologist?

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Spelling error should have been heamatologist not dermatologists or rheumatologist sorry

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He is my Hemotologist he deals with blood disorders. He is in West Penn Hospital in Bloomfield Pennsylvania. I do not see a dermatologist or rheumatologist. I have APS a blood disorder however no Lupus.

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Hi I now work as a freelance photographer as I felt I was unable to work for an employer anymore ( unreliable )

That way I do my own hours & work around bad days when I can.....

I did receive dla but they stopped it last Oct & I've struggled without it since, an appeal is still going through for me.....

Good luck x

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That's terrible that your DLA has stopped. I can't understand how people are expected to manage if they are as you say unreliable due to ill health. I've been threatened with sickness monitoring and disciplinary action if I'm off sick as I have been in the past, but it's not by choice that I'm off.

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Hi De121

Could you please tell us where you live, as also asked by Manofmendip (Administrator) above and we can help you to find an APS-specialist near your home.

Best wishes from Kerstin in Stockholm

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Yes I have replied on two occasions saying that I live in Manchester.

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Sorry correction I replied in another post not this one. But definitely Manchester.

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Hello Dee121,

This is my first day as an Administrator and the others are at this very moment attending "Patients Day" in London.

I am pretty sure you can find Specialists of APS in the UK at the Charity Website. Try that or please wait till tomorrow.

Best wishes from Kerstin in Stockholm

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Yes I have identified some on the site. However I'm not sure on their repetition but I'm working on vetting referred to St Thomas's. Thank You

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That sounds very wise indeed. Good luck in your "fight" to feel better.

Kerstin

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