The Atypical HUS Foundation

Madeleine Lekas
  • Female
  • Chicago, IL
  • United States
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Latest Activity

Madeleine Lekas commented on Madeleine Lekas's blog post Immune System Boosters
"Thanks Cheryl, Izzy is taking Florastar, purchased from Costco, every day.  I will also move on scheduling an appointment with a dietician."
Oct 6, 2016
Cheryl Biermann commented on Madeleine Lekas's blog post Immune System Boosters
"I've found Dieticians are a great help.  There are dietary issues with any renal failure, although, and GI problems are a big part of this disease too, so any dietary help you seek should be willing to consult with your specialists.…"
Oct 6, 2016
Madeleine Lekas commented on Madeleine Lekas's blog post Immune System Boosters
"Candace, thanks for responding.  I may look into the oils and talk the Cipro option.  Stay healthy!"
Sep 18, 2016
Candace L Simpson commented on Madeleine Lekas's blog post Immune System Boosters
"My doctor keeps me on Cipro to help fight off any infections of any kind! Seems to be working (fingers crossed). I haven't seem to had any problem in that area and have been on Soliris since may 2016! I am 26. So not around as many germs as she…"
Sep 15, 2016
Madeleine Lekas posted a blog post

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,MimiSee More
Sep 11, 2016
Madeleine Lekas commented on Judy Trynosky's blog post No Title
"Hello Judy, I'm sorry I did not respond sooner.  My daughter, Izzy, is currently taking Nortriptolin at night, and her headaches have subsided.  However, she keeps getting viral infections even though she takes a prophylatic dose of…"
Sep 11, 2016
Linda Burke commented on Madeleine Lekas's blog post Headaches
"Hi Madeleine, Sorry to hear this.  Ask your daughter's care team about "extra renal involvement" as aHUS can affect many other organs and not just the kidneys. I'd encourage you to call OneSource about this to share your…"
Jul 19, 2016
Madeleine Lekas posted a blog post

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 you found…See More
Jul 17, 2016
Linda Burke left a comment for Madeleine Lekas
"Welcome, we hope you find this site to be a source of information and support.  Please check out our aHUS resource list.  You may want to review the aHUS Bootcamp as a starting point, to get an overview of aHUS. We look forward to…"
May 18, 2016
Madeleine Lekas is now a member of The Atypical HUS Foundation
May 18, 2016

Profile Information

Birthday
March 9
Do you have a friend or family member diagnosed with aHUS?
Relative
I am a caregiver for an aHUS patient
Yes: for a pediatric aHUS patient
I am an adult aHUS patient.
No
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My membership request involves business interests as I seek additional aHUS information for business applications.
no
My child ( or myself as a patient) is best described as:
Question Does Not Apply To My Situation

Madeleine Lekas's Blog

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

Posted on September 11, 2016 at 8:04pm — 4 Comments

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

Posted on July 17, 2016 at 8:28pm — 1 Comment

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Join The Atypical HUS Foundation

At 3:37pm on May 18, 2016, Linda Burke said…

Welcome, we hope you find this site to be a source of information and support.  Please check out our aHUS resource list.  You may want to review the aHUS Bootcamp as a starting point, to get an overview of aHUS.

We look forward to your participation on this site.

 
 
 

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

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