Sticky Blood-Hughes Syndrome Support


I need some help with eradicating my 2 kids 7 / 11 about APS/lupus.

my son is stuggling to understand why one day / minute iam ok and the next in bed for hours at a time i have done the talk gone into the APS/Lupus website with him but still I feel he's struggling my sister suggested he comes with me to see my consultants but iam not sure about that.

Is there any groups for kids with parents with APS/Lupus ??

Are there any better website for him to understand what's happing to me ??

12 Replies

I don't know that there is a specific group, however some find using the 'Spoons Theory' a good way to explain the fatigue. Also apart from your Hughes Syndrome/APS and Lupus, have you checked your Thyroid, vitamin D, B12 and Iron lately? As if any of these are off kilter, then you will be even more fatigued! I am sure other parents on here will have a chat, I have been through similar myself. MaryF


What a fantastic way to expain it spoons x thanks Mary f x


What is spoons theory???


It's a really good way of explaining how a long term condition can effect u x


Hi there.

I think you mean educating, not eradicating!

Mary has given you some good advice.


1 like

Lol😂thank you x




I think it's also helped me understand and except it as well, it's been hard getting my head around not being able to do eveything I want to in a day x all my life i have been I can do it , I won't give up person and now it's how much can i do without paying for it. It's been a hard lesson on changing the way I think x not that iam giving up x


I know our kids can drive us crazy at times but eradicating them is a bit extreme! 😱😂😂 As Dave says, educating is a better option! xx


Lol x




I wonder if you have succeeded in finding a Specialist (Rheumatologist perhaps) now? When you feel better the kids will also feel more satisfied with their mother who have found a Doctor who can help.

How old are you kids?

Kerstin in Stockholm


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