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Sticky Blood-Hughes Syndrome Support
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Hughes syndrome at university

Im a 19 year old student in my first year of university and it was discovered that I have positive lupus anti-coagulant just under a year ago. I am suffering with fatigue and a 'fuzzy head'. Just wondering if there is anyone else around my own age or anyone with useful tips on coping while at university.

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Hello Amy and welcome.

Where are you from and who is managing your APS?

What medication are you on?

I'm sure that others on here will soon chat and help you too.

Best wishes.

Dave

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Hi Dave

I am studying in Sheffield but being treated by a rheumatologist in Cambridge. I am currently just taking aspirin but hoping to start taking something more affective soon

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Hi there, I hope your studies are going well, my daughter has Hughes/APS and Lupus and is nearly 18 and is hoping to go off to Uni soon. Is your Rheumatologist off our list of suggested consultants? My daughter is not on here yet, but probably will be some time. MaryF

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Thanks Amy

As my colleague, Mary, has said the charity has a list of consultants, which you can find here: hughes-syndrome.org/self-he...

Hope you get a more effective treatment soon.

Keep in touch.

Dave

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I have also been diagnosed with the lupus anticoagulant does that mean i have the actual lupus

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This is one of the blood tests they use to check for APS, it does not mean you have Lupus necessarily. It is quite possible to have Primary APS which means you have it without another condition, so don't get to worried or start researching other conditions you may not have as this can make you very anxious. I am at a University but on the other side ie a lecturer, I have found Plaquenil excellent for reducing fatigue and helping concentration. It takes a few weeks time kick in and doesn't work for everyone but it may be worth talking to your consultant about

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If your medical condition is affecting your day to day life/studies, you could seek advice from the Uni's Disability Team about support available to you. All the best

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Yes this is a good point which I have brought up before with others at Uni, seek support, student support, as you will find them good, but you have to make yourself known. I shall certainly be encouraging my daughter to do this when she flies the next etc. MaryF

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If it's affecting your ability to study then seek support from the university. I was diagnosed with Lupus Anticoagulant two years ago following pregnancy issues however in hindsight whilst at uni I suffered from bouts of fatigue and like you describe fuzzy/woozy head. i think it's when it started. I know everyone is different but I found that rest helped and for me it came and went. Back and forth a bit. I managed to get through and then worked full time as a teacher for 9 years. I don't have lupus just lupus anticoagulant. Just out of interest... Did they test you for it based on the fatigue/fuzzy head symptoms? I went to the doctors endless times and was told it was a virus and the only tests they did was blood count and an ECG. If only they'd tested it would have saved a great deal of heartache. Good luck with your studies!

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The doctors first thought that I had a virus too but they did eventually test for lupus anticoagulant. Sounds like what you had while at uni is very similar to what I am experiencing now - its very nice to know that it is still possible to get though and work full time while dealing with the symptoms. I was first tested due to fatigue and nausea but it took many months of blood tests before they tested for lupus anticoagulant. Thanks very much for your support!

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Hi Amy, I would second the recommendation to talk to the university disability staff. We are in the states, so I don't know how it works other places, but my daughter has a plan from high school that we are transferring to the university. They will give her a single room so that she can have quiet whenever she wants, and they are giving her accommodations to turn in work late if she is having a bad time. I think they also offer will alternate testing situations that she can take a longer time in a quiet room for exams. She also has visual snow so we are looking into large print text books. She has to pace herself and she has taken a year off to get treatment started, but we're hoping with these accommodations she will be able to return to school and manage well enough. We are also thinking she will do best if she takes a bit of a lighter load of courses.

Congrats to you for trying to find ways to manage while you are at school.

All the best to you, Lyn

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Hi there!

I can sympathise with your situation entirely.

I'm 21 and in my third year of uni in Nottingham, I was diagnosed with APS just as I began my first year and the levels of fatigue and problems focusing, understanding and remembering information can be beyond the beyond sometimes.

I really hope you are managing your studies without too much trouble!

Do you have access to the disabled student's allowance? I was approved for it in the middled of last year and it has been very useful.

I would imagine that you are much the same as me in that you don't know how you will be from one day to the next?

The main ways that I have been coping at uni is to make sure that all of the relevant people know about my condition so that if I need time off for illness or medical appointments, I can let people know and get the notes and work that I would miss otherwise.

Going for a night out as a student is always fun but it can be helpful to try and organise going out so that I either don't have to get up for a morning lecture or I have the day off, just to avoid being too tired.

One of the other things I do to is when I am having a good day I will try and hammer as much work as I can so that I haven't fallen too far behind when I have a flare up.

I don't know how helpful this will have been for you, I'm sure you know most of these things already but if you would like to private message I would be more than happy to, it is always nice to have someone of a similar age to talk to, especially when they are experiencing a similar situation :)

Caitlin x

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