The Atypical HUS Foundation

December 2011 Blog Posts (9)

Just a little summary .

Im only 15 yrs. old and around early October I was diagnosed with Atypical H.U.S. This journey has not been quite easy for a teen , but I have faith everything will get better. On September 16, 2011 I had surgery due to a perforation in my colon and now I have a Colostomy. At first it wasn't easy to accept this new concept but luckily mine is reversible. All of this occurred in Toronto, Canada Sick Kids Hospital . It was on a family road trip which didn't end up so well . The sickness…

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Added by Ivette Rios on December 26, 2011 at 7:00pm — 2 Comments

Merry Christmas to all AHUS families!

 I would like to take the time to wish all of the Atypical HUS families a very Merry Christmas and a healthy happy new year! I hope that 2012 will be better for all who have been touched by this disease, including myself. I may not have a job yet and I certainly may not have a kidney just yet, but I am hoping that 2012 will be bringing me better things to look forward to. One thing that will HOPEFULLY be occurring is a potential trip to California to attend a renal teen prom sponsored by the…

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Added by Jessica Olivia Frysz on December 25, 2011 at 1:47pm — 4 Comments

Merry Christmas and Happy New Year

The Aguallo Family would like to wish everyone a very Merry Christmas and aHUS free New Year!  We love each and every one of you!

Added by Jonathan Aguallo on December 23, 2011 at 8:13pm — 2 Comments

Keep Looking for Creative Solutions in 2012

Technology may yield some impressive press for innovations in 2012 and beyond, so please scan your news sources and draw our attention to any stories, articles, or research that may be of interest to the aHUS community.

While it remains to be seen whether Dr. Shuvo Roy and his team at the University of California will continue to make good progress with their artificial implantable kidney, we applaud the efforts of all researchers and clinicians worldwide who strive to improve the…

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Added by Linda Burke on December 20, 2011 at 12:57am — 1 Comment

Merry Christmas everyone!

Many of our population often come down with something this time of year and are stressed about not being at home when there is such an effort on everyone's part to make memories and spend time with loved ones.  So my proposal is everyone offer a little prayer and send your thoughts heavenward that we all stay well or get well in time to enjoy this wonderful season.  If any of you find yourself in a bad health situation, please let us know and we will flood you  with prayers and…

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Added by Cheryl Biermann on December 16, 2011 at 11:08am — 4 Comments

Update

Hannah is responding wonderfully to the Soliris treatments. She is still receiving them every two weeks (due this Friday). Her kidneys have returned to 100% function, she continues to gain her weight back and is considering enrolling in school after the holidays. Still, the most devastating for her, is the loss of her hair. She is still beautiful, but it's hard to convince her. Very traumatic. Please continue to pray for her as her doctors determine the appropriate time to "wean" her off…

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Added by Danna Vaughn on December 13, 2011 at 7:58pm — 1 Comment

Triple bouts with bad news

As my last blog stated my luck could be changing well... that isn't true anymore. What seemed like things were moving onward are now back to square 1. I interviewed for that job, didn't get it. I called the other veterinary clinic I interviewed at and was told that I would be considered for part time, instead of full time (which is partially good news). And lastly, the kidney front is now back to square 1, because my donor is now not a candidate to donate a kidney. So, I had suffered at…

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Added by Jessica Olivia Frysz on December 12, 2011 at 4:04pm — 5 Comments

Full Time School

Today  was Nathan's first day back to school.  I have been impressed with the school nurse since I met her last year...now I know for sure Nathan is in good hands.  He is lucky enough to have been assigned a locker with a boy whose mother wsa his kindergarten teacher and is a good guy himself.  This is our first attempt at a regular school year! 

We are still doing weekly labs, but we have an option to do them in the evening!  We'll have to see how it goes, if they are as effecienct…

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Added by Cheryl Biermann on December 7, 2011 at 11:24am — No Comments

Regarding Mubodina

     Since some speculation has arisen regarding a possible new drug on the horizon for aHUS patients, I wanted offer the few facts I found on the topic.  On Nov. 3, 2011, the “Bio in Italy Newsletter” noted that Adienne Pharma and Biotech based in Bergamo, Italy was granted patents for Mubodina®.  The article states that this Italian company, specializing in rare disease treatment and with a number of Orphan Drug Designations granted by EMA and FDA, was granted patents in both the European…

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Added by Linda Burke on December 1, 2011 at 1:30am — 1 Comment

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