The Atypical HUS Foundation

October 2013 Blog Posts (9)

Houston Meetup: Learning, Sharing, Caring

Global Genes and The Foundation for Children with atypical HUS joined together in Houston for a program of information and insight on October 25-26th in support of aHUS patients and their families.  A welcome reception and dinner on Friday night allowed opportunities to meet others affected by atypical HUS, and we were all inspired by keynote speaker Linda Loftus.  As parent of a son with aHUS, Linda’s passion about family advocacy issues touched a…

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Added by Linda Burke on October 28, 2013 at 3:30pm — 1 Comment

Bedwetting- cell cept? Prednisone?

So just looking to see if anyone has experienced this or if I should not be worrying at all. Ethan is 9 and is currently having problems wetting the bed at night. When he first got on prednisone we had this happen for about 3 weeks - I'm guessing until his body adjusted. For the last few months it has been a problem again. I monitor his nightly fluid intake and he takes his prednisone in the morning. His dosages has been steadily decreasing and I'm not sure if this could be related. His drs are… Continue

Added by Anne Bruns on October 25, 2013 at 1:09am — 1 Comment

NKF new iPhone app for kidney transplant recipients

Kidney transplant recipients  - check out the new, free app available on the iPhone. NKF has made it easy to have all the information you need to know right at your fingertips. And it's very user friendly, too.

 

 

Added by Dana M Simone on October 24, 2013 at 12:45pm — 1 Comment

aHUS Questions? Ask Dr. Greenbaum via Meetups Email

     Do you have specific questions for aHUS 'physician expert' Dr. Larry Greenbaum but are unable to attend the Oct. 25-26th Meetup in Houston?  There's an exciting new opportunity for your voice to be heard...send your questions to Carrieo@rareproject.org for inclusion in Dr. Greenbaum's Question and Answer segment.  Rare disease advocacy group Global Genes | R.A.R.E. Project will host the Houtson meeting and videotape Dr. Greenbaum's…

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Added by Linda Burke on October 15, 2013 at 10:30am — 2 Comments

Hand out for Family and Friends when they ask, "What can we do?"

    After just reading a blog on Lotsa Helping Hands regarding this topic, I realised this is something we haven't addressed directly.  I would like to get together a hand out for people to use, because, let's face it, when your world is turned upside down by illness, this question comes when you are least able to know or articulate how family and friends can help.  If you have things here I haven't mentioned, please let me know so it…

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Added by Cheryl Biermann on October 10, 2013 at 9:29am — 8 Comments

Join us in Houston on Oct. 25-26th, a Global Genes Meetup

     It's so exciting to have Global Genes host an outstanding program of aHUS education, networking and support on October 25th and 26th.....and I'll be there!

 

     A huge draw for me was the opportunity to hear Dr. Larry Greenbaum speak about aHUS diagnosis, treatment, and issues regarding this complex rare disease.  Some of you may recall that Dr. Greenbaum has been the Talbot's physician…

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Added by Linda Burke on October 5, 2013 at 12:30am — No Comments

Regional Meetings

Hello everyone, as you can see from our events page, we have a few regional meetings coming up. The nearest ones are Houston and Chicago.  If you've been fortunate enough to have attended one of these meetings or the meetings in Iowa, you know what an enormous benefit you receive from attending.  It is really a pretty rare event to meet with experts of Ultra Rare diseases, I encourage you to try and attend or send a family representative to attend one of these meetings.  You'll be able to…

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Added by Cheryl Biermann on October 2, 2013 at 2:24pm — 1 Comment

Insurance Company

My hemoglobin has been going up and down since I've had aHUS. Whenever my hemoglobin was below a 10, I would receive an  Aranesp shot. However, I got a letter recently from my insurance company stating that the Aranesp is not medically necessary for me to have because two weeks ago my hemoglobin was a 11.6. Today it went down to a 10.7. Not low enough to get the shot, but back going downward. I was told my doctors would have to contest that decision and give them a reason why I still require…

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Added by Lisa Stockdale on October 2, 2013 at 2:17pm — 1 Comment

Mom developed a body rash

Hi, this is my first blog and hope that I am doing it right and can some responses. My mom, who is 72 yrs old was diagnosed with AHUS just over a month ago. She has been getting the Solaris treatment, but for some unknown reason has developed a body rash. The Dr. are not sure what it is from, but believe it may be from the steroids, which they stopped. Was just wondering if anyone else has developed such a rash and if so what was it from and what was used to cure it. She is on medication for… Continue

Added by Kenneth wei on October 1, 2013 at 4:30pm — 4 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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