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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