The Atypical HUS Foundation

All Blog Posts (980)

New aHUS Websites

While you are welcome to read older content posted here, this website is no longer active.  New websites exist for the Atypical HUS Foundation (USA), as well as for a few other nations.  The aHUS Alliance (international advocacy in all countries) continues to expand, providing content and connections with the global aHUS website at www.aHUSallianceAction.org.

Multiple Facebook pages exist, and you can connect with aHUS advocacy…

Continue

Added by Linda Burke on October 6, 2017 at 1:00pm — No Comments

aHUS Alliance Global Video Project for Rare Disease Day, February 28, 2017

Rare Disease Day is right around the corner.  The world will join together on February 28, 2017 to raise awareness for rare diseases.  The theme for the upcoming Rare Disease Day is “Research”.   

 …

Continue

Added by Jeff Schmidt on December 26, 2016 at 5:47pm — No Comments

Immune System Boosters

Hello,

Has anyone taking Soliris found any typical methods of immune boosting, ie avoiding gluten, helpful?  My 11 year old daughter is on a bi-weekly dose of Soliris and spikes fevers intermittently which then require heavy doses of antibiotics along with a trip to the hospital.  I hate to cause her any more discomfort, but I was wondering if any one had found any homeopathic ways to boost the immune system while on Soliris.

Thanks,

Mimi

Added by Madeleine Lekas on September 11, 2016 at 8:04pm — 4 Comments

aHUS Awareness Day 2016 - Info & Resources

2016 aHUS Awareness Day - 24 September

Information & Resources

     The aHUS Alliance, an international group of atypical HUS patient organizations, has announced its 2nd annual global aHUS Awareness Day campaign will occur on 24 September 2016, dedicated to sharing information and insights into the extremely rare disease…

Continue

Added by Linda Burke on August 29, 2016 at 10:00am — No Comments

aHUS Awareness Day - 24 Sept 2016

     24 September 2016 will mark the 2nd annual world aHUS Awareness Day.  Patient organizations from around the world, in collaboration as the aHUS Alliance, have issued a press release providing details within an PRNnewswire,

From the 2016 August 24 Press Release:

"The aHUS Alliance invites all stakeholders to join together to promote visibility and to highlight insights and…

Continue

Added by Linda Burke on August 24, 2016 at 7:50am — No Comments

aHUS Alliance Global Video Project for aHUS Awareness Day, September 24, 2016

(Updated August 9, 2016 - new coloring page added)



The second annual aHUS Awareness Day is coming up fast.  The world will join together on September 24, 2016 to raise awareness for aHUS.  The global theme for aHUS Awareness Day this year is ‘Rise above aHUS’.   

The global aHUS Alliance (the umbrella organization of Atypical Hemolytic Uremic Syndrome Patient Organizations from around the…

Continue

Added by Jeff Schmidt on August 3, 2016 at 3:00pm — No Comments

Mimi - per headaches.... I've been diagnosed since Feb 2015, and too had headaches for the first 6 months of treatment after I got my infusion.  I also take daily antibiotics for chronic infections (…

Mimi - per headaches....

I've been diagnosed since Feb 2015, and too had headaches for the first 6 months of treatment after I got my infusion.  I also take daily antibiotics for chronic infections (I take cipro for pseudomonas).  When I first started with the headaches, I took Tramdol before my IV.  After awhile, decreased to the point I no longer need it (about 6 months total).  Do keep in mind, I am 60, so may not apply in your case.  I only had the headaches the day /evening after…

Continue

Added by Judy Trynosky on July 18, 2016 at 8:40pm — 1 Comment

Headaches

Hello,

I hope I am posting this correctly.  My 10 year old daughter was diagnosed this year with aHUS.  She was released from hospital at the end of May.  She is currently taking the bi-weekly dose of Soliris and her lab work looks good.  However last week she was diagnosed with strep, even though she's on the small dosage of penicillin each day.  The strep symptoms are almost gone, but she is complaining of chronic headaches.  Is anyone else experiencing chronic headaches, and have…

Continue

Added by Madeleine Lekas on July 17, 2016 at 8:28pm — 1 Comment

Meet This Courageous Family Ready to Leave Their Country To Save Their Young Son with aHUS







Here is the story of an amazing and courageous family from India.  Deepika and Anil Jaiswal have a young son Aadhyan who has had aHUS since he was 1 year old.  He is now close to 6.  But what’s different for Aadhyan, is that unlike those in the United States (and…

Continue

Added by Jeff Schmidt on June 21, 2016 at 7:07pm — No Comments

aHUS Global Site launches at www.ahusallianceaction.org

     The aHUS Alliance of patient organizations announced on 28 May 2016 the launch of an aHUS global website that will connect, inform and and encourage collaboration among stakeholders within the global aHUS community, for the benefit of all those affected by aHUS.   Visit www.ahusallianceaction.org to view this portal of worldwide aHUS connectivity.

     While national aHUS advocacy groups remain paramount for…

Continue

Added by Linda Burke on June 6, 2016 at 3:04pm — No Comments

24 September 2016 is international aHUS Awareness Day.

24 September 2016 is international aHUS Awareness Day.

     This week the aHUS Alliance has announced the theme for the 2016 aHUS Awareness Day as 'Rising above aHUS', with an advocacy campaign symbol of a red balloon to unite messages worldwide.  There are many common concerns that affect aHUS patients regardless of nation, culture, or language such as:  the need for quick and accurate diagnosis, access to treatment and healthcare…

Continue

Added by Linda Burke on May 31, 2016 at 9:34am — No Comments

Shocking!!! Just 6 Months of Soliris for Our Friends in Ontario, Canada on Dialysis!!! Use Your Facebook Skills to Help!

Recently, Health Minister Dr. Eric Hoskins of Ontario, Canada announced that Soliris would finally be made available to those on dialysis and in need of a kidney transplant.  This would be good news except that these patients will get a maximum of 6 months of…

Continue

Added by Jeff Schmidt on May 25, 2016 at 7:54pm — 3 Comments

aHUS POLL WEBINAR - 21 JUNE 2016

     The aHUS Alliance is pleased to announce that RareConnect will offer a webinar on 21 June at 11 am EST, with aHUS expert Dr. Christoph Licht to present analysis of the 2016 aHUS survey results. The aHUS global survey closed 15 April with 233 responses from 23 countries, responding in 6 languages.

Register here: …

Continue

Added by Linda Burke on May 21, 2016 at 1:17am — No Comments

Only 6 Months of Soliris for Dialysis Patients in Ontario, Canada. Let's Do Something About It!

In February, 2015, the Ontario government announced that it would provide interim funding for Soliris for aHUS patients who meet “defined clinical criteria”.  This was great news for those who were new patients with aHUS.  But those…

Continue

Added by Jeff Schmidt on May 2, 2016 at 7:00pm — No Comments

aHUS Global Poll 2016 - Results Update

      A worldwide survey of aHUS adult patients and pediatric caregivers was launched on Rare Disease Day (29 Feb 2016) and continued through 15 April 2016 to accommodate a rollout of survey translations in 6 languages.     The survey premise was that patient and caregiver poll responses can provide better understanding and insights into aHUS diagnosis, treatment, and medical care from the patient perspective.  A similar effort was conducted in partnership with RareConnect in 2014, with 214…

Continue

Added by Linda Burke on April 30, 2016 at 11:30am — No Comments

2016 aHUS Family Conference - Register for the Nov. 4-6th Mtg

     The Atypical HUS Foundation is pleased to announce that the aHUS Family Conference**, in conjunction with The University of Iowa, will be held in Iowa City, Iowa on November 4-6, 2016 at the Sheraton Iowa City Hotel.  Registration is limited, FMI see details at the Eventbrite registration site:   http://ow.ly/4n2v06 .  Questions about aHUS Family Conference?   There is a direct way to “Contact…

Continue

Added by Linda Burke on April 25, 2016 at 3:00pm — No Comments

OMS721: Omeros update re aHUS Clinical Trial

     In a 20 April 2016 press release, the Omeros Corporation has announced initiation of “patient dosing in its OMS721 Phase 2 program in corticosteroid-dependent renal diseases. The Phase 2 clinical trial of OMS721, the company's lead mannan-binding lectin-associated serine protease-2 (MASP-2) inhibitor being developed for complement-related diseases…”

 

     From the Omeros press release, “This new trial expands the company's MASP platform,…

Continue

Added by Linda Burke on April 21, 2016 at 11:30am — No Comments

aHUS Global Survey – Participate Today, ends 15 April

2 DAYS LEFT – All aHUS adult patients and caregivers of pediatric aHUS patients worldwide are invited to participate in the

2016 global aHUS poll at http://ow.ly/YR8JK, survey available in 6 languages.…

Continue

Added by Linda Burke on April 13, 2016 at 9:16am — No Comments

aHUS Global Survey – Update: Info as of April 2, 2016

aHUS Global Survey – Open through 15 April 2016

Share your aHUS journey, survey in 6 languages (for aHUS Patients & Pedi Caregivers):…

Continue

Added by Linda Burke on April 3, 2016 at 1:00pm — No Comments

Mid-Point Results - 2016 aHUS Global Survey

The following blog was originally posted on the RareConnect global aHUS webpage:

Update:  MARCH 30, 2016  

NEW - Survey now in 6 languages, with survey end date extended until April 15, 2016 !

There are new 2016 aHUS global survey…

Continue

Added by Linda Burke on March 17, 2016 at 12:30pm — No Comments

Monthly Archives

2017

2016

2015

2014

2013

2012

2011

2010

2009

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.

************************

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

Badge

Loading…

© 2017   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service