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Comment by Linda Burke on March 22, 2011 at 11:44pm Phooey....let's hope the news turns to a nicer tune soon, sweet Chloe needs some feelin' better days! Skyler's labs were slightly off for 2 months, guess it's been a bad winter of minor colds going around here in Maine. Just enough to worry his Mom for a couple of months....Skyler just got his first set of "good' labs back since Christmas, and I join you in the gray hair/no sleep arena with that.
It must be doubly hard to put on your 'tuff hat' yet again with so many unknowns on multiple fronts. Thank goodness Chloe's Dr. Bananas is on the case, as Dr. Hernandaz is fantastic.
Comment by Cheryl Biermann on March 22, 2011 at 10:27am Hi Lisa,
Good luck with everytrhing, I know I probably don't need to remind you not to give her dye during her MRIs, but I'm doing it anyway, just in case in the frantic need to relieve her of symptoms and pain and everyone trying their best to figure it all out, they forget. Hugs for your whole family.
Comment by Kerri Grey on March 22, 2011 at 4:50am WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
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Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.
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