Undifferentiated connective tissue disease/lupus and university

[jrhart]

Hi, I've recently been diagnosed with undifferentiated conective tissue disease (UCTD) but my rhumotologist said it all lupus (I'm on medication for SLE) but theres also other aspects of other diseases too. I struggle a lot with it and I just wondered if UCTD was recognised the same or even as an illness so I can get some sorts of help to manage university life. Also I wondered if the financial help is the same for a sufferer of UCTD as opposed to SLE.

I'm extremely worried about going to uni to do a mental health nursing course which is very full on and my UCTD not being recognised or not getting any support.

Thank you in advance.

[Barnclown]

Hello jrhart & welcome

There are others here in this wonderful forum diagnosed with UCTD. Am sure you'll get some very helpful replies. And Paul Howard at Lupus UK head office monitors this forum so will see your post: I'm sure he will be able to advise you.

I'm just replying because I have long been interested in the diagnosis process and especially the way some UCTD & MCTD patients eventually are diagnosed with SLE. You're correct: the prescription treatment plans are very similar. we've had some good discussions here on this subject lately. Here is a link to one...which can help you understand what your rheumatologist meant:

healthunlocked.com/lupusuk/...

I'm glad you've found us and I hope you'll let us know how you get on. You're course work sounds great: am wishing you every success.

🍀🍀🍀🍀 coco

[jrhart in reply to Barnclown]

Thank you so much! I'll join onto the UCTD too xx

[Hidden]

It sounds as if you are not quite clear yet about your diagnosis so perhaps best to see your GP and ask for a copy of the rheumatigist's clinical letter for clarification.

From what you are telling us I think your rheumatologist has diagnosed Lupus plus UCTD? This would mean that you have Lupus and also some symptoms of other undifferentiated connective tissue diseases such as RA, Scleroderma and Sjögren's?

Whatever the name this given I don't think your university would make a distinction between one rheumatic disease and another. Anyway UCTD is a diagnosis of itself. It simply means that you have symptoms and signs of various diseases which are overlapping and aren't full blown but in combination are still just as hard to live with. It is not a non diagnosis as you are maybe assuming?

I would imagine that your university would simply need to know how your connective tissue diseases affect you in order to decide what additional support to offer you with your studies. You may need a letter of confirmation from your doctor (GP or rheumatologist) and they will have some kind of designated student support system in place that you should be referred to.

You will probably meet up with and perhaps be assigned a student support worker or some sort of occupational health person who will assess your needs. Some universities contract this out to charitable agencies out with the university while others have their own dedicated student support team.

The outcome may mean you get extra time to complete essay deadlines or with work placements. If you miss lectures because of your health problems then your tutors should be understanding and you may get technical or practical support or counselling if you feel these would help.

Being diagnosed with Lupus and or UCTD is a big thing and if you feel you need more time to adjust to the medications and come to terms with this then they should be willing to defer your place I would think. On the other hand it might be extremely absorbing and empowering for you to be to be learning about mental health at this stage in your own journey.

So I would say this needs some serious discussion and thought with help from family members, good friends, doctors and those who will be responsible for your learning.

Don't underestimate how much time it will take you to adjust or how much emotional and practical support you may need while you come to terms with this diagnosis. But equally it is really important to bare in mind that that the medication you are given might be very effective and that this course might be exactly what you need. Try to be really gentle on yourself while you work it all out.

[jrhart in reply to Hidden]

Thank you, your time to write this really means a lot and it has helped. I'm 18 and didn't really know much about CTDs so it was a shock and most of the people I'm around also don't realise that it is difficult to be so full on like I do, I work 5 days a week as well as doing 5 days a week of A-levels as well as going to the gym and trying to have a social life! It's very hard, but thank you xx

[whisperit]

Twitchytoes has said it better than I could. I'd only add that support will be based on your functional disability rather than diagnosis per se.

My daughter is currently at Uni, and has been provided with aids including an adapted chair, desk and other bits and pieces. Once the medical evidence of a need for additional support was accepted, she had a pretty free rein to decide what specific things she required, within what might reasonably be expected.

Oh, and do make sure that the Uni knows about your needs at the earliest opportunity. You don't want to find yourself in a position of disclosing your difficulties only after you have failed assessments and then having to get into arguments over re-sits etc etc. Nightmare!

[jrhart in reply to whisperit]

Okay thank you, I will ring up and let them know, just worried about it effecting my getting in on such a hands on course! Thank you

[Paul_Howard Partner LUPUS UK]

Hi jrhart ,

Students with disabilities can apply for Disabled Students' Allowances (DSAs) which are paid on top of other student finance. Unlike other student finance, DSAs do not have to be repaid. To find out more about DSAs click here: gov.uk/disabled-students-al.... All disability benefits tend to be points-based systems and are awarded based on how you are impacted by your condition, rather than the diagnostic label itself.

It may be helpful to get a letter from your doctor explaining your diagnosis and outlining areas that you have difficulty. This could be useful for evidence in any benefits claims and to provide to your university.

The Lupus Encyclopaedia states that “UCTD is a common diagnosis for patients of rheumatologists. In fact, more people have UCTD than have SLE. If diagnosed with UCTD, you are not alone; 10% to 20% of all referrals to major medical centre rheumatologists initially have an undifferentiated connective tissue disease”.

If you need any more information about lupus or LUPUS UK, you can request or download one of our free packs at lupusuk.org.uk/request-info...