The Atypical HUS Foundation

Diane schaller
  • Female
  • Orange, CA
  • United States
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Diane schaller's Friends

  • Anne Bruns
  • Kimberly Tressler
  • Dwight Pfonner
  • Sharon Madrid
  • Jonathan Aguallo
  • Melissa Hearn
  • Svetlana Finley
  • Phyllis Ann Talbot

Diane schaller's Discussions

PTSD / Anxiety EMDR

In Iowa, a few parents shared that their children were struggling with PTSD and/or anxiety, so I thought I would share this with you. Our 11 year old daughter Devon has also been struggling the past…Continue

Started Nov 4, 2014

 

Diane schaller's Page

Profile Information

Birthday
March 15
Do you have a friend or family member diagnosed with aHUS?
Yes
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:
Factor H (CFH) /Protein (Gene)

Diane schaller's Photos

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Diane schaller's Blog

Abdominal pain

Just wanted to share a great experience we have had with a homeopathic program. I will try and make this as short as possible, but more importantly, I really want to share our families life changing experience.



Like a lot of our children and adults with aHUS, our daughter, Devon has suffered from abdominal pain. She is now 11-year-old and was diagnosed 3 years ago. Two weeks before she was diagnosed, abdominal pain was one of her first and consistent symptoms. The 5 weeks she was in… Continue

Posted on May 19, 2015 at 10:41pm

San Antonio, Texas regional meeting

Here is my very first blog on my very first speaking engagement at an aHUS Regional meeting. I wanted to get more involved, so I stepped out of my comfort zone after being a stay-at-home mom for the past 12 years, got on a plane and flew to beautiful San Antonio Texas.



Global Genes hosted the regional meeting on March 13-14, 2015, in San Antonio Texas. I love that our regional meetings are held at fabulous destinations, in great hotels with delicious food.



Friday night… Continue

Posted on March 29, 2015 at 11:41am — 2 Comments

Last day to sign up for San Antonio!

Good morning aHUS families. Who will be attending San Antonio the weekend of March 13? Today is the last day to sign up so please do so ASAP.



If you have not attended a regional meeting, this is an incredible opportunity to meet and ask doctors who specialize in aHUS. If you have attended meetings in the past, you know you can always learn more. We are so fortunate to have such a great foundation who puts these weekends together for us. Let's take advantage of this and sign up today.… Continue

Posted on February 23, 2015 at 10:18am — 1 Comment

Fierce Foods Academy by Maxlove Project

Happy New Year aHUS families. I encourage you to take a look at Fierce Foods Academy by Maxlove Project. Their sweet boy Max was diagnosed with brain cancer 3 years ago. They have done amazing work to help kids fighting cancer and life threatening conditions with whole-body wellness resources, education and research.

By registering and/or liking their Facebook page you will receive great information, recipes, and nutritional information.…



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Posted on December 29, 2014 at 10:35pm

Comment Wall (3 comments)

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At 12:28am on January 8, 2013, Linda Burke said…

Hi Diane,

Thanks for your note!  I just received the Atlanta details from Allie late today, and am currently posting them in a blog here, on Facebook, etc so that you can have the agenda as well as location specifics. 

Hope that there's a great turnout for this wonderful opportunity to share info - the guest speaker is Dr. Greenbaum from Atlanta (Hyde Talbot's doctor, so the Talbot family members on this site are likely to attend).  Would love to see your family's RSVP in the EVENT Forum!

Hope Devon is doing well, please say hello to Dwight from me...

At 1:16am on March 21, 2012, Dwight Pfonner said…

Hi Diane,

Please let me know if there is anything you need. 

See you in a few weeks... love ya, Dwight

At 11:53pm on March 20, 2012, Linda Burke said…

Hi Diane,

Making the leap from you to Dwight might be a stretch, but it seems a logical assumption on my part,  I hope that this site can provide you with some insights and information into aHUS.... a good place to start at the "aHUS Bootcamp" tab at the top of this page.  You may already be totally covered regarding this basic info and overview of the disease and various aspects of patient care.  Detailed information is offered in video format, with aHUS researchers from the University of Iowa and others presenting from the UK. (Check out the Home Page for Links).

The U of Iowa is a great lab for your daughter's genetic screening, and probably someone in her care team has already mentioned Soliris (eculizumab) as the only FDA approved drug used to treat aHUS patients (you might wish to view the Soliris Forum for details).  Welcome to this network,  we encourage you to ask questions of our online aHUS community and hope it offers support.

 
 
 

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