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Hi, I posted on here recently asking about lupus with regard to my 8 year old daughter who has ITP (another autoimmune disorder). She is currently undergoing more tests as it looks like she has either lupus. However, today I have been told that it maybe lupus, but it maybe ALPS.

I know this is the wrong place to post, but I can't find much info about ALPS and I'm wondering if anyone here has any experience of it and knows how bad it really is.

4 Replies

Hello. I'm sorry to hear you are having such a worrying time. Do you mean APS - sometimes known as Hughes Syndrome - sticky blood? I do not have it but just thought you might find some information on the Hughes Syndrome community's site. I hope you find some information and support, and wish you and your daughter well.


Thank you for your reply Wendy. It is ALPS which stands for Autoimmune 

lymphoproliferative syndrome. It is apparently very rare which is why I think I can't find much info on it.


Gosh, I have never heard of that! I even googled it and couldn't see anything other than websites about the French Alps! I hope you find what you need soon. X


I had ITP myself as a child, 10 years old. The symptoms disappeared as mysteriously as they came. ITP reappears when I was 25 and the treatment at that time was a spleenectomy. Now at the age of 60 (2years ago) I get Lupus. Not sure if there is a common thread here. Sorry don't know anything about ALPS. Thoughts and prayers are with you and hope you find some answers.


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