The Atypical HUS Foundation

April 2013 Blog Posts (9)

NORD aHUS Regional Meeting New Jersey

I was fortunate this past weekend to attend the aHUS regional meeting hosted by NORD in New Jersey. My mother accompanied me since Jack and my husband took part in a motorcycle rally in Boston in support of wounded vets.



Special thanks to NORD for putting together such an educational and networking event!



More than 50 patients and caregivers attended . The majority of patients were adults, a few just very recently diagnosed.



We were treated to a fantastic… Continue

Added by Dana M Simone on April 30, 2013 at 8:13pm — No Comments

Phoebe - Update

I have been meaning for a while to update this blog.  



At some point in February, we finally switched Phoebe to Soliris.  We were watching the factor H autoantibodies decrease.  We were given hope that her autoantibody level would go to zero.  They started at above 2,500 and they decreased to 2,000, and then1,200, and then 300.  At that point, we still decided to switch to Soliris for several reasons:

1. Plasma was scaring us, and it was taking 12 hours 2-3 times a…

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Added by Brett Lettiere on April 24, 2013 at 4:05pm — 3 Comments

Chloe's endoscopy

Chloe had an endoscopy yesterday and they said her intestines look great.. They took a few biopsies and we will know by the end of the week if her stomach problems are from some disease process or If they are from abdominal migraines.... Also Chloe's treatments have been going well and her kidney biopsy is scheduled for June 27th in Seattle it's been the longest 6 months of my life... I'm very interested if its helping.... Praying for some answers and ohhh man was it nice to see dr h in Seattle… Continue

Added by lisa ann peterson on April 24, 2013 at 11:20am — 2 Comments

NEW! aHUS Video Clip Library

 

BIG NEWS !!

Now topic-specific video clips have been created as an 'aHUS Video Clip Library'. Finally, you can look up a topics such as 'Diagnosing aHUS' and see several physicians/aHUS clinicians provide detailed medical information. Culled from the full presentations at the Foundation's last aHUS Family…
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Added by Linda Burke on April 23, 2013 at 12:51am — No Comments

Omeros and new aHUS treatment

Hello everyone.  It has been a while since I have posted but we have been super busy.  First a little update on Isla.  We have had a good last few months.  No major sickness to speak of and no major relapses since end of Dec.- first of Jan.  Most labs look really good except we are still a little low on the heme.  But she is holding the highest levels she has had since October with a heme value around 10.  We are praying and keeping our fingers crossed that this continues.  Now I was…

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Added by Dustin G. Wiggins on April 23, 2013 at 12:00am — 3 Comments

IDEAS requested!

Recipie for kidney stones:

One aHUS patient, preferably ripe, (You can tell if they're ripe by noting the background, dialysis?, feeding tube? Years of aHUS service?)

kidney transplant with Soliris

new urin that has copious amounts of phosphorous and calcium

stich left over from new ureter site for collection of  calcium/potassium, (optional) to accumulate on

due to long periods where…

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Added by Cheryl Biermann on April 17, 2013 at 10:30am — No Comments

Hike for Hyde, cool newspaper article, and yes - a broken collar bone oh my

Yeah - you read that right, Hyde broke his collar bone Friday night playing outside with all the neighbors. I swear you can't make this stuff up! And I was naively thinking we might get to skip 'normal' kid trauma given all the other junk he's been through - but obviously I was mistaken! I also have learned that a broken collar bone is a PAIN! I know no broken bone is a picnic but there is no real way to cast a collar bone so there is no real way to protect it. Hyde…

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Added by Phyllis Ann Talbot on April 16, 2013 at 12:50pm — 4 Comments

April 26 & 27th - aHUS Regional Mtg in New Jersey

CONNECT.     SHARE.      SUPPORT.

Join us in New Jersey - April 26-27, 2013

For A Regional Meeting for People Living with aHUS…

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Added by Linda Burke on April 8, 2013 at 11:30pm — No Comments

Onward and Upward!

Just another little update on Nathan.  We have been attending Physical Therapy, Occupational Therapy and Speech Therapy once a week since September due to continued problems and even worsening of some things led us to a neurologist who recommended further testing.

Next week, Monday, the Physical Therapist is moving Nathan on to once a month rather than once weekly!  You would not believe the tools they have available!  We learned about "sleeping" muscles.  For these, she…

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Added by Cheryl Biermann on April 4, 2013 at 10:18am — 2 Comments

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IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

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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