does anyone know about sjogren's syndrome?

[Katie18]

my brother has just been diagnosed with it. I have churg strauss syndrome. he lives in leeds and is looking for a good consultant. Thank you

[Hidden]

Hi Katie,

I know a little mainly because it can be an overlap with Vasculitis and other autoimmune diseases, it's more rare when it's a primary illness.

There is a very good charity which has a helpline, this is the link and they should be able to point your brother in the right direction. As with Vasculitis it's important to see a Consultant who really understands it.

bssa.uk.net

[Suzym2u Moderator Vasculitis UK]

Being a dentist, John knows quite a lot about it. If you want to talk to him via the helpline. But as Keyes has said there is a Sjogrens Society and apparently Arthritis UK Research. Will find the link. arthritisresearchuk.org/art...

[Hidden in reply to Suzym2u]

The British Sjogren's Syndrome Association (BSSA) is the main charity and they have a helpline. Your brother can phone and be given a list of names. But I would counsel him to be very careful and choose someone who is a Sjogren's specialist rather than simply having a special interest. I learned this the hard way!

[piglette]

Venus Williams the tennis player has Sjogren's she got it in 2011. She managed to get to the semi finals at Wimbledon this year with it!

[Hidden]

I have just been rediagnosed with primary Sjogrens having previously been diagnosed with RA. As with any connective tissue disease there are those with mild or well controlled versions of Sjogrens (ie Venus) - but equally those with very severe versions - usually where the central nervous system is involved or non Hodgkin's Lymphoma - or both.

So please don't hold Venus up as a roll model for me to aspire to anymore than you would with Wegner's or other forms of Vasculitis. Not good. It is potentially just as serious a disease and there is often overlap with forms of Vasculitus as Keyes has said. For example I'm being urgently investigated for secondary cancer (Sjogrens brings a significantly higher risk of Lymphoma to other CT diseases) and CNS involvement presently.

Don't underestimate the potential misery or destructiveness of any multisystem connective tissue disease please.

[piglette in reply to Hidden]

I believe Venus was not able to play tennis for several years and was in a bad way. I mentioned her to show that things can get better.

[Hidden in reply to piglette]

Sorry if I overreacted piglette - it sounded to me as if you were saying that Sjogren's isn't that serious a disease - and can be cured. Perhaps a comment like this on a post where someone is searching for information about a disease - should be rather more sensitively expressed.

Venus obviously hasn't had any CNS or PNS involvement as yet - and hopefully never will or she definitely wouldn't be able to play tennis at that or any other level. She is fit and wealthy enough to be able to access the most expensive treatments, physio etc. Still she is amazing of course for her accomplishments despite Sjogren's - but it would be better still for others with Sjogren's if she told us what she does and takes to get by.

It's always a mixed blessing sharing a disease with a famous sports person. On one level, like para-Olympians, they are achieving so much against the odds that this is a great thing. On the other hand the rest of us with the disease feel somehow diminished by their accomplishments and the rest of the healthy poplulation forever cites them as an example of how pathetic we are being!

[piglette in reply to Hidden]

Venus is now an Ambassador for the Sjogrens Foundation. She did not tell people she had got it initially, but had the terrible fatigue and could not raise her arms even. She used to burst into tears when she saw her doctor. She has gone totally vegan which apparently has helped her symptoms.

[Katie18]

Dear Piglette and Twitcytoes I do understand what both of you are saying and thank you for trying to help. I hope my brother doesn't compare himself to Venus - he still needs to see a consultant and doesn't know if he has any related diseases. I do think that comparison may give him hope though as someone newly diagnosed. I think the points you both make are helpful. If I hear about people with CSS that have achieved amazing things despite their disease it can both inspire me or make me feel rather inadequate.

[Hidden in reply to Katie18]

Thanks for this very balanced reply Katie. I am glad you can see both sides.

I'm just feeling terribly touchy because it's taken so long for me to get this rediagnosis for myself. If I feel anyone is making light of it on the various communities I use - I want to set them straight very forcefully. I realise now that Piglette was not setting out to make light of Sjogren's as a disease - but because of where I am with mine just now I interpreted it that way.

Once your brother and I have the all clear, hopefully, of the possible complications - we can both settle to allowing Venus's achievements to give us some hope.

I repeat that, it would be doubly admirable, if she could very honestly set out what course of treatment she has found to be most helpful and what aspects of her life her presentation of Sjogren's affects most.

Otherwise I fear it that acknowledging a diagnosis of Sjogren's Syndrome isn't actually that helpful or even gives false expectations to sufferers and their friends and families. Thanks.