Rare Disease Day - Hughes Syndrome

[purple]

Tomorrow is Rare Disease Day. As many will know, Hughes Syndrome is classed as a Rare Disease. Here is the information that is published on the website of the National Organisation for Rare Disorders rarediseases.org/rare-disea...

I wonder if you agree with what is written there?

[HollyHeski Administrator]

There is nothing to disagree with but a lot not mentioned - one of the things that sticks out to me is its not just blood clots - its thick sticky blood that can cause various other symptoms. Be interested to see what others think?

[Yllek in reply to HollyHeski]

I completely agree! X

[MaryF Administrator]

Thank you for putting this on. MaryF

[Ozchick]

Is that why we get 'our' day only every 4 years? 😊

[disloyalorder in reply to Ozchick]

I had thought this, but it turns out that it's just the last day in February is the allocated day. It does look a bit awkward when it's on a leap year though!

[BillyBean]

No mention of drowsiness, constant fatigue and Rheumatoid Arthritis as other side effects , or are these just incidental and not related to APS?

[Lure2 in reply to BillyBean]

I have learnt that Rheumatoid Arthritis is an own rheumatological illness like Sjögrens or SLE.

That is why it is so important to get an Expert to separate the different illnesses from eachother and to give the the right treatment.

Kerstin in Stockholm

[HollyHeski Administrator]

No they are related & quite a few more symptoms thats what I meant when I said a lot missing.

Probably too many to mention!

[jetjetjet]

I agree with all the above -- so much said,but so much not said .

[jetjetjet]

my osteo Arthritis went threw my body like wild fire , from my toes to my calf's ,upper legs , lower and upper back then arms hands and finally my neck where it among other things is causing huge problems for me .