The Atypical HUS Foundation

June 2011 Blog Posts (20)

Life is Good again!

I am exactly one week post kidney transplant and I haven't felt this good in 3 years! I still have a few more hurdles to get over with the recovery process but my life has already changed drastically for the good. I had a living donor give me one of her strong, beautiful kidneys on June 23. I am so thankful and pray that each and every one of you wo are still battling HUS and dialysis will get your lives back as well. The recovery hasn't been too bad. I thought I was ready for the pain because… Continue

Added by Jill Ziegler on June 30, 2011 at 9:11am — 6 Comments

Co-morbidities of long term kidney disease catching up with me

I have been on dialysis for 14 years now. 14 years! Gosh, that's long! I was diagnosed with aHUS in July 1997.

 

A few months back, I started noticing my skin become increasingly brittle, prone to cuts. I also started getting blisters on my hands and feet. I showed this to my nephrologist who asked me consult with a dermatologist. The dermatologist said this could be a condition called…

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Added by Kamal D Shah on June 24, 2011 at 9:24pm — 6 Comments

Transplant Update

 

Hi Everyone!

 

Jack came home from the hospital on Monday - this week was a little overwhelming, just trying to adjust to the sudden, new and different lifestyle. Clinic twice this week - modifications to some meds; phosphorous, potassium and magnesium on the low side, so taking supplements. Otherwise, he is feeling great and it's amazing how healthy he looks! We still want to shield him from the outside world, but are trying to be sane about it.

I had taken…

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Added by Dana M Simone on June 24, 2011 at 5:46pm — 2 Comments

University of Iowa paper - Pre-emptive use of Eculizimab

Please see the latest publication from the University of Iowa.

 

 

pre%20emptive%20Solirisi.pdf

Added by Bill Biermann on June 24, 2011 at 3:00pm — No Comments

Nathan's Twisting, Winding Road to Transplantion

As you know, following, approximately 5 years of dialysis we are persuing a transplant with Eculizumab.  Private insurance becomes secondary to Medicare, (required by law), after 30 months of dialysis, so we approached Medicare for Compassionate Use of Eculizumab. Medicare does make some exceptions, but aHUS is not one of them.  Their policy is neither approval or denial, they just do not comment at all!  We spoke to another family in the same situation, but who had TWO additional insurances…

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Added by Cheryl Biermann on June 23, 2011 at 1:57pm — 2 Comments

E. Coli Outbreak in Germany Triggers new Clinical Trial of Soliris

 

      Contaminated foods have caused illness and death in many countries throughout the years, but current reports of E. coli outbreaks in Germany are a serious issue in global news.  First appearing in May as a concern for those traveling to or living in Germany, a new and virulent form of E. coli has proven difficult and complex to treat.  In very rare cases  this bacterium can cause STEC-HUS, or shiga-toxin…

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Added by Linda Burke on June 20, 2011 at 11:44pm — No Comments

Been a while...

Well, it's been a while since my last post. Let's just say that I didn't want to make myself out to be bragging on how wonderful Brandi has been doing since her tranplant, but wonderful she has been. We are hitting a little over 7 months since her transplant, and things have been going fairly smoothly. About a month ago, she got a bad kidney infection and had to stay in the hospital a week, but has recovered from that nicely. She has been fighting off a nasty virus, that doesn't allow her…

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Added by Kathy Yates on June 17, 2011 at 8:26pm — 5 Comments

Day 4 Transplant Update

Jack moved from ICU to the Transplant unit Wednesday night. The staff is great - very intent on educating us about the new med regiment - meds to fight rejection, infection, hbp. Central line for dialysis was removed yesterday:)!Electrolytes have been on the low side, so Jack is getting IV sodium, magnesium, phosphorous, and drinking those delicious potassium powered drinks. 

This morning's labs include: Creatinine: 0.51, HCT:…

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Added by Dana M Simone on June 17, 2011 at 9:34am — 11 Comments

Soliris (eculizumab) Phase 2 Study Results Announced

  In a news release this week  http://www.alxn.com/News/article.aspx?relid=583989,  Alexion Pharmaceuticals announced the presentation of final data from the two Phase 2 studies of Soliris (brand name for eculizumab) as a treatment for patients… Continue

Added by Linda Burke on June 16, 2011 at 11:30pm — No Comments

A New Hope (sorry Star Wars but it was appropriate)

I am 29 years old and diagnosed with aHUS two years ago.  It was scary for me because I had never seen a hospital bed before that - except when I was born.  After recieving LOTS of plasma pheresis and some dialysis, I got better and even though things weren't perfect, they were good enough to not have treatments and lead a somewhat normal life.  I did have to take blood pressure medicine but other than that, nothing was all that bad.  Well, this past February, I had my second relapse,…

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Added by Jaime Lauck on June 16, 2011 at 10:41pm — 3 Comments

A little about me.

Hi, I am a mother of 4 (plus 2 stepchildren) and have recently remarried (hence the photos!)

I have had 2 children affected by aHUS. In 1993 my 4 month old daughter Jaimee was diagnosed with HUS. She became very unwell and ended up on peritoneal dialysis. Very sadly we lost Jaimee at 13months old. Her HUS was thought at the time to have been caused by an ecoli infection. Twelve years later my oldest daughter Kasey became unwell and was also diagnosed with HUS although this time…

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Added by Sharon Walker on June 15, 2011 at 4:35am — 5 Comments

Jack has new kidney!

We received 'the call' from MGH on Sunday afternoon and Jack was in surgery at 2:00 am, Monday morning.  He received both plasma pherisis and his first dose of Soliris prior to surgery and had a second infusion of Soliris last night. Before getting off the operating table he had already produced a liter of urine...his latest creatinine level today was .9. In the PICU now, but will probably move to the Transplant unit…

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Added by Dana M Simone on June 14, 2011 at 8:31pm — 10 Comments

2011 Parent Conference - Save the Date

SAVE THE DATE:

 

The University of Iowa has graciously volunteered to host the 3rd "Atypical HUS Parent Conference" .   This is a great way to meet the top medical Professionals while socializing with parents at the same time. Here are the specifics:

 

Friday, Oct 7th     Early Arrival  7:00pm  Meet and Greet

                           Dinner sponsored by the Foundation

 

Saturday, Oct 8th  The Confererence at the University…

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Added by Bill Biermann on June 14, 2011 at 10:46am — 2 Comments

Our miracle happened

I have very good news to share with everyone.  My little girl Mine Vosloo was diagnosed with aHUS Sept 2009.  She had factor H problem.  In three days time her kidneys has shut down and she was very ill.  After she was diagnosed with aHUS we spent 10 months in hospital not even going home for an afternoon.  She had in total about 29 blood transfusions and plasma pharesis and transfusions.  Her blood pressure was very high and she started getting very bad fits.  I was so lucky to find a…

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Added by Retha Vosloo on June 6, 2011 at 2:49pm — 4 Comments

Coming Attraction- June 11th aHUS family conference in the UK



This exciting opportunity is coming right up next weekend!

Join Dr. Tim Goodship at Newcastle upon Tyne  for the UK's 1st Atypical HUS Conference on June 11, 2011. Details are at www.aHUS.org.uk .

The Center for Life (A Centre for World-Class Science) is the…

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Added by Linda Burke on June 6, 2011 at 12:54am — 3 Comments

Graduation

 

Jack had been feeling unwell all week, plagued once again by abdominal issues, and did not make graduation last night. He put in a good effort, arrived at rehearsal with cap & gown, but became sick before the march began. So, we all turned around and came back home....a  letdown, but the good news is that he is feeling better and better today.

On the bright side, the Hemodialysis clinic threw him a spectacular surprise party yesterday morning. (Steven and I knew, but Jack…

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Added by Dana M Simone on June 4, 2011 at 7:17pm — 1 Comment

IF anyone is interested - here's the link to a letter in the NEJM where Soliris (Eculizimab) has been used in treatment of normal HUS after ecoli.  If you google German eColi and Soliris - there are …

IF anyone is interested - here's the link to a letter in the NEJM where Soliris (Eculizimab) has been used in treatment of normal HUS after ecoli.  If you google German eColi and Soliris - there are a flood of stories out there - Alexion is actually offering the drug free of charge in Germany when requested it looks like.  Not sure how this affects us but definitely interesting. 

 …

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Added by Phyllis Ann Talbot on June 3, 2011 at 2:51pm — 2 Comments

HUS in europe and SOLIRIS

In Europe, we face an outbreak…

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Added by Nicolas on June 2, 2011 at 2:04pm — 2 Comments

Suggestions from the National Kidney Foundation about traveling with kidney disease

You’ve already broken out the shorts and t-shirts and cleaned your bbq grill. Summer’s around the corner and even if you have kidney disease, you can take the road trip or exotic vacation you dreamed about all winter. With a little advance planning, you can buy those plane tickets or rent the RV. Here are the top 5 summer travel tips from the National Kidney Foundation.
  1. Consult your doctor to determine whether your health is stable enough to withstand a trip and discuss your plans in…
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Added by Cheryl Biermann on June 2, 2011 at 12:02pm — 4 Comments

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The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

WELCOME - JOIN US!

The Atypical HUS Foundation 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.


NEW DIAGNOSIS OF aHUS?
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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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.

 

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.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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