The Atypical HUS Foundation

Amber S Schlaht
  • Female
  • Grand Prairie, TX
  • United States
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Amber S Schlaht's Friends

  • Lisa Reed
  • Erin Adams
  • Rhonda Banks
  • Linda Burke
 

Amber S Schlaht's Page

Latest Activity

Amber S Schlaht posted a blog post

Speaking on behalf of the Foundation at the Phoenix meet up in December 2015

Just recently I was asked to tell my story and speak on behalf of the atypical HUS Foundation at the Phoenix meet up. My husband and I are from the Dallas Texas area, so we flew out to Phoenix first thing Friday, December 4. We got checked into our hotel and attended the dinner provided by Global Genes. During the dinner, we had an "ice breaking" type activity. The goal was to introduce yourself to the group, tell where you are from, and tell an embarrassing story about yourself. This was a lot…See More
Dec 16, 2015
Erin Adams left a comment for Amber S Schlaht
"Thanks Amber! I've actually been a part of this group for a while now. When were you diagnosed?"
Oct 14, 2015
Amber S Schlaht left a comment for Erin Adams
"Welcome Erin! Please let me know if you need anything. I am available here or through FB"
Oct 14, 2015
Amber S Schlaht and Erin Adams are now friends
Oct 14, 2015
Amber S Schlaht left a comment for Kathleen Gordon
"Welcome, we hope that you find this site to be a source of information and support."
Oct 13, 2015
Lisa Reed and Amber S Schlaht are now friends
Sep 4, 2015
Amber S Schlaht commented on Linda Burke's blog post aHUS Regional Meetings - Update
"I will be at the PHX meetup in December! Can't wait!"
Sep 3, 2015
Amber S Schlaht is attending Linda Burke's event

aHUS Mtgs. - Sept to Dec 2015 at Various

September 18, 2015 at 6pm to December 5, 2015 at 4pm
NORD and Global Genes are hosting aHUS regional meetings.   Hear a presentation by an aHUS medical expert, capture this chance to ask a physician your aHUS questions, connect with other aHUS patients and their families – and MORE!These events are free, and include one night's hotel accomodations, event meals, and a travel stipend.    OCT. 16-17th Anaheim, CA – Hosted by NORD …See More
Sep 3, 2015
Amber S Schlaht left a comment for Lisa Reed
"Lisa, I am so sorry for your loss! Please know that the aHUS family is here to support you in anyway that we can. "
Sep 3, 2015
Amber S Schlaht commented on Amber S Schlaht's blog post My Journey this far with aHUS
"I'm already registered with Alexion, have a case worker, and on Soliris. I don't have children and have no plans for children. I have too many other diseases to even dare try to have children. "
Nov 16, 2014
Lisa Stockdale commented on Amber S Schlaht's blog post My Journey this far with aHUS
"Thank goodness your doctor's diagnosed you so quickly. I went to four hospitals until they figured out what I had. This website is the best for talking with people that know what you're going through. You are not alone. Take care and fight…"
Nov 16, 2014
Linda Burke commented on Amber S Schlaht's blog post My Journey this far with aHUS
"Hi there Amber, it seems so unfair to be ill then compound that with the double whammy of having a rare disease and learning that you apparently need to explain your diagnosis repeatedly. Any new drug and/or new health issue is scary, particularly…"
Nov 10, 2014
Donna Kolp commented on Amber S Schlaht's blog post My Journey this far with aHUS
"Thank you for sharing your story, Amber. As scary as aHUS may be, Soliris, in my opinion, IS a miracle medication. You and your hematologist have taken the steps to prevent side effects from occurring, which is very small. My son Jonathan was…"
Nov 10, 2014
Cheryl Biermann commented on Amber S Schlaht's blog post My Journey this far with aHUS
"It is also quite possible that what was diagnosed as Chrone's was low level aHUS, and the drug just accelerated the inevitable. Take comfort in the fact that Soliris has been used in PNH for over 10 years now and patients report no side effects…"
Nov 10, 2014
Amber S Schlaht posted a blog post

My Journey this far with aHUS

Early in September 2014, I started not feeling well. I was tired all the time, dizzy, getting headaches, brain fog, dark urine, and overall not feeling well. I kept telling myself that I needed to go have blood work done, but I kept putting it off. Sunday, Sept 6th, I knew something wasn’t right. So off to the ER we went. After waiting forever to see a doctor. I had blood work drawn, got one bag of IV saline and was released with “dehydration” and told my lab work was normal. I asked for a copy…See More
Nov 10, 2014
Amber S Schlaht posted photos
Oct 26, 2014

Profile Information

Birthday
July 29
Do you have a friend or family member diagnosed with aHUS?
No
I am an adult aHUS patient.
Yes
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
I have attended a meeting or conference to learn about aHUS.
NO - but I'd like to attend a future meeting.
My membership request involves business interests as I seek additional aHUS information for business applications.
1978

Amber S Schlaht's Photos

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Amber S Schlaht's Blog

Speaking on behalf of the Foundation at the Phoenix meet up in December 2015

Just recently I was asked to tell my story and speak on behalf of the atypical HUS Foundation at the Phoenix meet up. 

My husband and I are from the Dallas Texas area, so we flew out to Phoenix first thing Friday, December 4. We got checked into our hotel and attended the dinner provided by Global Genes. During the dinner, we had an "ice breaking" type activity. The goal was to introduce yourself to the group, tell where you are from, and tell an embarrassing story about…

Continue

Posted on December 16, 2015 at 11:56am

My Journey this far with aHUS

Early in September 2014, I started not feeling well. I was tired all the time, dizzy, getting headaches, brain fog, dark urine, and overall not feeling well. I kept telling myself that I needed to go have blood work done, but I kept putting it off.

 

Sunday, Sept 6th, I knew something wasn’t right. So off to the ER we went. After waiting forever to see a doctor. I had blood work drawn, got one bag of IV saline and was released with…

Continue

Posted on November 10, 2014 at 11:04am — 5 Comments

Comment Wall (2 comments)

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Join The Atypical HUS Foundation

At 7:43pm on October 14, 2015, Erin Adams said…
Thanks Amber! I've actually been a part of this group for a while now. When were you diagnosed?
At 12:58am on October 25, 2014, Linda Burke said…

Welcome Amber, hope this website is a source of information and support.  There's an aHUS regional meeting in Texas on  Nov 7 and 8, with details at http://atypicalhus.ning.com/events/nord-2014-ahus-regional-meetings .

 
 
 

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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