The Atypical HUS Foundation

August 2011 Blog Posts (13)

Cheryl and Nathan's big day

Sorry for the short remarks but cheryl will be out of recovery any minute, and Nathan within an an hour.

 

But the bottom line.......(and all of your with this disease will understand)...........NATHAN HAS produced Pee Pee. 

 

Wow, so simply but elegant words, right?     So thats the bottom line in all of this, right?   

 

I will issue something more "Director like"  shortly, but for now, time to savor this as a…

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Added by Bill Biermann on August 31, 2011 at 4:00pm — 13 Comments

Nathan's update

Well we made it through this verrrry long day.  It took 4-ever to get pheresis going because of waiting for FFP to thaw and of course the wonderful computer system slows everything down, but we were done by 2. 

We headed off for dialysis and were visited by many of our old hospital friends, which Nathan chose to ignore all the excitement by drowning us out with the tv.   It's his way of handling his stress.  He did take a break to socialize, okay, I mean "kick his dad's butt" in…

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Added by Cheryl Biermann on August 30, 2011 at 9:47pm — 4 Comments

The waiting game...oh boy the waiting game...

Besides having to play the waiting game for results on a possible kidney transplant, I'm awaiting results to see if I have a job at a very top knotched veterinary hospital. I just interviewed for a Laboratory technician position at a veterinary hospital called the Orchard Park Veterinary Medical Center; don't be fooled by the very LARGE name, because it is also a LARGE facility. When I walked into this place, this place literally looked like a hotel for animals...it is no wonder that animals…

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Added by Jessica Olivia Frysz on August 30, 2011 at 12:10pm — 3 Comments

Finally results

After many years of waiting and many tests done in Canada, France, Germany and Italy...

They have discovered in France that Olivia has a new type of MCP mutation.

All other factors are normal and explains why she never required any plasma treatment and spontaneously would snap out of the relapse herself.

Also explains why she never had high blood pressure, no kidney damage and never required dialysis.

This is known to be the mildest form of AHUS.

We have…

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Added by Theresa Pereira on August 24, 2011 at 4:53pm — 6 Comments

Global aHUS Advocacy Panel Meets

     On August 4, 2011 a global aHUS Advocacy Panel convened to discuss issues and needs of aHUS patients and their families.  Representatives of patient organizations focused on aHUS, kidney disease, and rare disorders met in person and by phone with the goal of building a common and more complete understanding of aHUS, its diagnosis, and its impact.  We appreciate the efforts of Alexion Pharmaceuticals in hosting this meeting.

 

     The Foundation for Children with Atypical…

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

On the road to transplant...getting nervous, getting myself mentally prepared for the outcomes ahead of me

Well... I received some sort of news as to what is to happen when I am to receive a transplant. No donor in sight just yet, but there are tests being done and HOPEFULLY I will see some sort of results. I am told that I will be needing the plasmapharesis initially before the transplant can occur and then it will be the Eculizumab along with that.  I had to read a whole booklet explaining the whole procedure behind the Plasmapharesis "piece of cake" I said to myself, but in the process of the…

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Added by Jessica Olivia Frysz on August 19, 2011 at 11:53am — 2 Comments

another little step towards transplant

Today Nathan was visited by his Child Life Specialist, (she has been there for him his whole life), and they discussed it just being Nathan, his dad and Megan walking down to the surgery without me.  She is so good with him, she asked him what he would like to do on that walk.  His choices are to tell jokes, visualize or play with the i-pad.  So if anyone has any good jokes, he likes hospital jokes!  She also showed him pictures of the new OR and let him smell all the different sents he has…

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Added by Cheryl Biermann on August 17, 2011 at 5:15pm — 5 Comments

II'm defying the odds, but some reason people think I'm not taking initiative and complaining, what's the deal?

I had a very heated argument with one of my family members who happens to be 7 years older than I am (makes him 30 years old).  He mentioned that he had some suite tickets for a sporting event, for the Buffalo Bills. I said "that's cool I didn't know you got those.." and I basically said it would be nice if the Bills won a few games once in a while. He goes onto say that I was hating, that I didn't like the Bills (which is true on that part-I don't...they lose almost everytime). But, the…

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Added by Jessica Olivia Frysz on August 13, 2011 at 11:36pm — No Comments

The good, the bad, and the ugly

Wow - where to I start? First off - we have an amazing vacation - well - amazing for the kids, fun for Bill and I but VERY tiring - lots of running around. Started with a fun weekend in Pennsylvania to see our nephew Will get christened - and he did great! Much better than our Ruthie who threw up on the altar during the ceremony.

We then had an amazing day at Hershey park with about a million people - whew - Ruth had fun with all the cousins - Hyde did too but…

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Added by Phyllis Ann Talbot on August 11, 2011 at 3:58pm — 4 Comments

Ryan's Hope 2011 cancelled

After careful consideration our family has decided that we won't be able to host our annual fundraiser this year.  I am entering the Nursing Program full time at a local college and my mother in law's plant that she works at is closing down right at golf tourney time so her time will be restricted also.  We decided that we would rather cancel the tournament than to put on a ho-hum event that will disappoint our faithful supporters.  I hope this doesn't impact the foundation financially and…

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Added by Heather Still on August 8, 2011 at 11:03am — 3 Comments

Meeting in London family Patient support group

Following on from the conference in Newcastle England

aHUS Patient Family Support Group on Saturday 10th September in London.

 

Added by debbie thelwell on August 6, 2011 at 5:10pm — 2 Comments

SAVE THE DATE: "Atypical HUS Parent Conference" October 7-9

I am so looking forward to our conferece at the University of Iowa coming up!



I recall the first year when Nathan's health was such that Bill was able to attend with our son, Joe, but I stayed home.  I was relieved in a way, thinking that all of the technical aspects of research would be beyond my ability to comprehend.  (After all, who hasn't attempted to read at least one of the medical papers that have been published and been cluelsess!) I'll really be embarrassed if I'm the only… Continue

Added by Cheryl Biermann on August 2, 2011 at 1:38pm — 7 Comments

Grafted 15 days there

We returned at home this weekend. It's a new life, a new birth. No more dialysis, preparations, connection, disconnection ... 1 hour and a half we have available in our schedule. Unbelievable. Lou-Anne is going superbly. It devours. Although it continues to urinate, so that the layers are not enough night. She has to learn. It does piss over her since the age of 1 year. What happiness! I wish us all to know that.

She had her injection of Soliris Friday before going out. She does not…

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Added by Nicolas on August 1, 2011 at 3:05am — 6 Comments

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Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
• • • • • • • • • • • •
  
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
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