The Atypical HUS Foundation

March 2014 Blog Posts (5)

blood in stool

Cole has been feeling great...I still have not received a phone call about his Wednesday labs yet...But last night he had some blood in his stool. I called the doctor and she said not to worry just get him on a probiotic and some laxative and call if it continues...he has always had trouble going regularly. ....But why was there blood in his stool..has anyone else had this problem

Added by Alison Montes on March 31, 2014 at 10:32pm — 6 Comments

CANADIAN aHUS Mtg on April 26th

Announcing the 2nd Annual Meeting of aHUS Canada

aHUS Canada Meeting

Saturday, April 26, 2014

Novotel North York Hotel, North York, Ontario

8…

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Added by Linda Burke on March 29, 2014 at 12:00am — No Comments

Back to school

Cole went back to school today for the first time since he was diagnosed.He had his second Soliris infusion on Wednesday and he is feeling great we havent gotten labs back yet but doctors oked him to go back to school. We had a conference beforehand with the principal and teachers so everyone has a gameplan and knows what to look for. I was a nervous wreck he is in Kindergarten and this morning I dropped him off armed with only a water bottle and his backpapck, but he had a great day the…

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Added by Alison Montes on March 28, 2014 at 5:46pm — 2 Comments

Stomach ache

Hi,

Just a little recap on our daughter Devon.  She is 10 years-old and was diagnosed two years ago.  After an incredibly difficult first few month, she has been the picture of health.  The only thing that slows her down, is an occasional stomach ache.  This past month, they have been on a more regular basis and the past 72 hours have been awful for her.  

I've seen many posts, and have read that is very common for our aHUS patients.  Do we know why this happens or has…

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Added by Diane schaller on March 26, 2014 at 12:08pm — 5 Comments

aHUS Diagnosis and Treatment Access

     If you’ve been checking aHUS issues in the news, you realize that there’s a wide difference in aHUS diagnosis, treatment, and access to Soliris in different parts of the world.  Some nations have aHUS patient groups (like the fab aHUSUK group) who are strong advocates for increased drug access and health care reimbursement in their country.  Families and patients in other nations (like strong newcomers aPSGA in Australia) voice their objections…

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Added by Linda Burke on March 12, 2014 at 3:30pm — No Comments

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