The Atypical HUS Foundation

Hi ! Just hoping someone sees this and has some sort of idea as to what I am talking about. I was diagnosed with atypical HUS June 2015. Since then my kidneys have been improving but I have INTENSE left side pain. It is right below my left kidney. After ct scans, getting my appendix removed and ultra sounds. No one is finding a reason for my pain. I am so frustrated. I am learning what I can about AHUS but does anyone have chronic pain with this disease?

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Comment by Jennifer Smidt on April 13, 2016 at 1:51pm

Hi Liz, I'm new to this site so sorry for a late comment.  I just wanted to share that I too have left side pain.  It is my spleen which is enlarged.  I have to take pain meds I get so miserable.  I do understand.  Keep talking with your doctors and I hope you find answers and some resolution.  I hope this finds you feeling better.  Blessings, Jenny

Comment by Linda Burke on March 10, 2016 at 11:09am

Hi Liz,  so sorry that you are in this situation. Assuming that you've already discussed this with your medical team at length, but this site does have a blog at http://atypicalhus.ning.com/profiles/blogs/ahus-complications-poten....

At the end, there's a link to an Alexion press release about aHUS potentially affecting other organs in the body - you can connect with Alexion's OneSource team at 1-888-SOLIRIS to discuss this with an informed nurse/ case manager.  Hope this helps, please keep us posted.

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