The Atypical HUS Foundation

November 2011 Blog Posts (18)

Website Maintenance this Friday

We will be performing scheduled maintenance on www.atypicalhus.org  this coming Friday, December 2nd, from 10 p.m. to 12 a.m. (Midnight) Pacific Time.  During this time, all Ning Networks will be unavailable and the Foundation’s interactive website will simply show a message asking folks to check back later.

We appreciate your patience and apologize for any inconvenience as work is done to complete some necessary updates.

 

Added by Linda Burke on November 30, 2011 at 11:59pm — No Comments

My luck could possibly be changing

When I see all of the fantastic news on the transplant recipients receiving good outcomes from their transplants with Soliris, I often imagine what it will be like for me. For me, this is not just an ordinary change, it will be an EXTRAORDINARY change. For 22 years, I have been living on a dialysis machine and counting. Come this February it will be just about 23 years that I celebrate on a machine (not a celebration I look forward to every year). But in a way, it is a celebration, because I…

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Added by Jessica Olivia Frysz on November 30, 2011 at 10:10am — 3 Comments

EC Approval regarding Soliris use with European aHUS Patients

 

 

     A little over two months after Soliris received FDA approval (Sept. 23rd) for use with American aHUS pediatric and adult patients, the European Commission (EC) has approved Soliris (eculizumab) use for treatment of pediatric and adult patients with atypical hemolytic uremic syndrome.  Soliris was previously approved for use in the treatment of patients with paroxysmal nocturnal hemoglobinuria (PNH), another serious and ultra-rare blood…

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Added by Linda Burke on November 29, 2011 at 11:37pm — No Comments

Soliris Authorization in Europe for Treatment of Patients with aHUS

The SOLIRIS is finally approved in Europe to treat aHUS.


The Authorization for the Marketing of today.

First major victory in the logical result of the FDA approval.

It remains to decline the authorization in European member states to support repayments by the agencies.

Check out the article Alexion's page : http://www.alxn.com/News/article.aspx?relid=627659

Added by Nicolas on November 29, 2011 at 3:45pm — 2 Comments

Update - November 2011

Hi!!

Haven't been on in a while.  Still trying to adjust to California and Sydney got really sick in October.  First with Pneumonia and then a fungal infection that caused us to give up our beloved PD and swtich to Hemo.  Not a fan of driving 2 hours one way, 3 days a week.

Hoping for a better Holiday.

Added by KaTrina Slaughter on November 28, 2011 at 5:43pm — 6 Comments

A Question for Transplant with Soliris patients

Perhaps you've read the blog about Nathan's swollen arm?  If not he woke up about 3 weeks ago with a stiff, sore, swollen elbow.  No bruising apparent.  X-rays on follow up showed nothing broken, just fluid.  Testing for infections all negative.  BUT, (there is always a but, right?)  His LDH went from low 400s to 780's and. .white count from the 4's to 7's.  Red count continues to be low. H&H just a smidgen low. 

. This am went in for labs, also saw renal and ortho.  Nothing…

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Added by Cheryl Biermann on November 28, 2011 at 3:00pm — 4 Comments

A LONG overdue update and a Happy Thanksgiving message to the aHUS families out there!

I know it's been quite a long time since I have posted an update on this site. I have been quite busy working a 3 day a week period at the doggie daycare I work at, all while trying to find an LVT job (no luck yet). I do all of this all while being dialyzed 3 days a week and all while awaiting some good news on the transplant and well...FINALLY I received some good news I have been awaiting for and only within a couple weeks before this very holiday. I receive a call from one of the…

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Added by Jessica Olivia Frysz on November 24, 2011 at 2:30pm — 4 Comments

Hi all, well it has been quite a while since i have updated on Ashley.  I guess the good news is that there is not too much to report... he continues to remain relatively stable on his fortnightly do…

Hi all, well it has been quite a while since i have updated on Ashley.  I guess the good news is that there is not too much to report... he continues to remain relatively stable on his fortnightly dose of Solaris!!  As has always been the case his Potassium levels can still cause issues, his hb levels still require erythrpoietin injections and his ldh levels have still never been in the "normal" range.  However, his creatinine, platelets, urea etc all tend to be borderline normal, which is…

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Added by Kerri Grey on November 24, 2011 at 12:30am — 1 Comment

Wishing everyone, A blessed and Happy Thanksgiving. also giving update.

Hello everyone, hope all is well. Just wanted to wish everyone a very Happy Thanksgiving Holiday. Sorry I haven't done an update in a while just has been rough month. So here we go it has been a little over one month since Destiny started Solaris. With that she has went from having plasma exchanges 3x a week to none. Her CBC labs have been up and down but again has not needed a plasma exchange. Her Reneal Pan... labs  on the other hand have not been…

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Added by Destiny Floyd-Rakes on November 22, 2011 at 11:15am — 3 Comments

Going to three weeks between infusions--post transplant

Alyssa recently asked her  doctors whether she could move to three weeks between her Soliris infusions because she ended up going three weeks due to an illness she had on the week she was suppose to receive Soliris last month. Dr. Kouides (her hemotologist) spoke to her nephrologist and transplant team and the doctors in Iowa and has decided to go ahead with the three week plan.  They plan to keep a  close eye on her blood levels during this trial, but I am wondering if anyone else who is…

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Added by Deborah Deffenbaugh on November 22, 2011 at 8:40am — 2 Comments

Remission and Soliris?

Hi all,

My son Milan, who has aHus without known defect, is in a state of remission for almost 3 years now (he becomes 6 next month).

His kidney's are detoreating and a transplant is nearing. (he is on a diet without dialysis)

Here my question: Can Soliris improve his kidney function and so delay the need for a transplant?

Thanks in advance.

Frank 

Added by Frank Reyniers on November 13, 2011 at 4:37pm — 2 Comments

Clinical Trial info: Soliris and Transplants

     Discussion at the Oct. 8th 2011 aHUS family conference at the University of Iowa included interests voiced by several aHUS families regarding transplants with supportive Soliris (eculizumab) therapy.  For patients/parents wishing to keep abreast, here's a reminder to check the listing of links to various clinical trials now recruiting participants.  As always, it's critical for patients/families to keep informed and to discuss your particular case in detail with your medical care…

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Added by Linda Burke on November 13, 2011 at 6:30am — 2 Comments

The saga of the sore...elbow.

You'd think after almost 11 years, I would use my past experiences to be prepared, but no, I was too worried about over reacting! 

Nathan woke up with a stiff, sore elbow.  Okay, so he probably slept on it, right?  At 9,I had trouble getting a bp, (we only use the right are because since the fistula clotted, the left is always higher), because he couldn't get it straight.  I called CG, only to hang up because I remembered, I can now use the pediatrician!

We had plans to window…

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Added by Cheryl Biermann on November 12, 2011 at 10:06pm — No Comments

Three part story about The Foundation for Children with AtypicalHUS

I'm not sure if any of you have heard of patch.com, the web-site news that specializes in local news, but if you type in Arnoldpatch.com the first two parts of a three part series are now posted.  You may be interested to  know they interviewed us for over an hour.  As you know, this is not an easy disease to get to know in an hour, but I think they did a fairly good job. Only we "experts" will be able to detect anything less than perfect! 

There is even a picture of the cover of the…

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Added by Cheryl Biermann on November 11, 2011 at 7:13pm — No Comments

Just an observation

Today, as has been since going to tranfusion of Soliris to every two weeks, Although, numbers remain very good, Nathan drug himself along to the hospital and struggled to get his thoughts out, he did only two answers on a reading assessment the entire time we were there.  We headed home to pick up baby sis, and run a few errands, by the time we were headed south on old 55, my son was blasting out songs to Annalise about the months of the year ect.  He's sitting beside me concentrating on the…

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Added by Cheryl Biermann on November 8, 2011 at 2:46pm — 1 Comment

update

Today is my birthday.  Not often do I share that information.  But today has got me reviewing.  So I've had occasion to review the last twenty years to myself and now to you.  We've come a long way and somehow we've also gone backward.  In twenty years we've had a significant break through in treating aHUS.  There is now hope for my daughter to get a kidney and keep it.  She's waited 20+years for that to happen.  In the last 20 years I've seen our society take steps backward in how we view…

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Added by Colette Ann Frysz on November 8, 2011 at 1:02pm — 2 Comments

'Normal'

Just realized how long it has been since the last update - the good news is that it's because we've been so crazily busy doing 'normal' things - there's nor much crazy medical stuff to tell!

Bill and I had a great trip out to Park City (for all of 18 hours) - Hyde ended up not going - there was some concern at the last minute due to the how high up the resort the meeting was being held was - over 8500 feet and they had a few folks with altitude sickness so we…

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Added by Phyllis Ann Talbot on November 2, 2011 at 4:55pm — 1 Comment

Another visit to the Pink Pig

Here's a link - 2 more videos here from our visit this morning with a local morning show ;-)

 

http://www.myfoxatlanta.com/dpp/good_day_atl/FOX-5-Storm-Chaser-Visits-the-Pink-Pig-20111101-gda-sd

Added by Phyllis Ann Talbot on November 1, 2011 at 1:40pm — No Comments

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