The Atypical HUS Foundation

July 2013 Blog Posts (5)

High LDH levels

Hi all

Can i query LDH levels with you please.  Ryan's LDH levels at base line ie he well remains at 850, despite being on Soliris infusion every 14 days.  However all other blood results show the aHUS is not active, query of C5 C9??, sorry have probably not got this one correct.  Platelets are good, haemoglobin ok, haptoglobin ok, have not exact numbers for these but know they ok.

LDH however remains and has remained very high, above normal.  It has me and our…

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Added by sabrina kiernan on July 29, 2013 at 5:06pm — 12 Comments

almost 5 months

Hi everyone!  Hope everyone is doing alright.  I'm almost at the 5 month mark since I was diagnosed with aHUS.  I am now doing peritoneal dialysis, which is going much better than hemo did.  At least I can do it at home.  I opted for the PD cath to be put up high, between my breasts, so that I can take baths and even sit in a hot tub if I'd like as long as I don't get my exit site wet.  I have a port that I get my Soliris in every other week. I have been having some chest pain lately, but…

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Added by Kristen Bruner on July 25, 2013 at 7:23pm — 4 Comments

Ehrlichia Chaffeensis

The treatment is Doxycycline and it is noted people who are immune suppressed have the worse experiences with it.  Nathan got off easy.  We were discharged but his tacro level keeps rising, it is now 17 and they want him at 6ish.  Sunday morning labs bright and early.  The ehrlichia is wreaking havoc with his liver enzymes too, which, is messing with the ability to regulate tacro, I think.  His wc went back down to 3.8 but the neutrofills are 750s and should be 1000 so he's still at risk for…

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Added by Cheryl Biermann on July 19, 2013 at 7:46pm — 3 Comments

Mysterious Fever

So, after successfully completing his school year with perfect attendance, Nathan has been down and out with high fevers since Saturday.  on Friday, we had gone to the childhood home of Samuel Clemmons, better known as Mark Twain, toured his house, what was Huck Finn's home, Becky Thatcher's home and his father's law office, and the infamous cave where "Injin Joe", met his demise.  About halfway into our day, Nathan started to complain of pain under both ribs, unable to find a store with…

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Added by Cheryl Biermann on July 16, 2013 at 8:23pm — 9 Comments

Starting up a Blog for Adults with aHUS

It has been great hearing from people on this website about aHUS. I wanted to start up a blog for adults with aHUS. How has it been for you with work, family, and everyday living?

 

This can be a place to vent or just to know that there is someone out there with the same problems, dreams, and hopes that we can have.

 

To start I am 28 and have had aHUS for a year. I am on Soliris and have been doing okay on it. My numbers have not gotten worse nor a lot better.…

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Added by Lisa Stockdale on July 11, 2013 at 3:00pm — 5 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

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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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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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