The Atypical HUS Foundation

Barbara Farcher
  • Female
  • Saugerties, NY
  • United States
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Barbara Farcher's Friends

  • Lisa Reed
  • Sarah Woollard
  • Megan Russo
  • Jennifer Christopher
  • vicki adler
  • Alyssa Deffenbaugh
  • Jill Ziegler
  • Cheryl Biermann
  • Patrick Brophy
  • Donna Kolp
  • Linda Burke
 

Barbara Farcher's Page

Profile Information

Birthday
June 19
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.
not for business applications
My child ( or myself as a patient) is best described as:
Not Tested, Interested in Undergoing Genetic Testing

thanks for the welcome, I wish we didn't have to meet because of having something so awful in common, but it's comforting to know I am not alone.  My Son was extremely fortunate to receive Soliris within 72 hours of presenting.  He was REALLY sick but is showing improvement Thank God.  The doctors arent happy with his improvement but I am! He came out of ICU in 11 days.  We are so new to this that my head is spinning but am trying to read, read, read. 

    Again, thanks for the support and thank goodness for such an informative site!

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Barbara Farcher's Blog

Hemotology Convention Review

Hello Everyone, I decided to caption this blog with Hemotology Convention for those (like me) who didn't know what "ASH" stands for.

ASH- Is the American Society of Hemotology. Their International convention was in Orlando and for the first time Our Foundation had a booth! I was honored to be asked to represent our foundation along with Megan Russo. I feel we were a great team as I am the caregiver, and she is the patient. It was awsome to see all the doctors light up when we would say… Continue

Posted on December 28, 2015 at 2:54pm — 2 Comments

Pittsburgh Meet Up!

I just returned from the most recent stop on the AHUS Tour, Pittsburgh PA! For those of you who have attended meet-up before...you know that as part of the friday evening "icebreakers" they ask everyone to share an embarrasing moment...well mine this week was I MISSED MY FLIGHT!! Holy Cow....I arrived at the airport without my licnese, which I had taken out of my wallet the previous day...and didn't put back into my wallet.....OH NO!!! So I jumped in my car in Albany NY and drove as quickly as… Continue

Posted on May 18, 2015 at 11:35am

aHUS Meetup in Pensacola!

First let me say- I NEVER tire of attending our "family" meet ups! I'm not sure if it's because I am a social butterfly at heart, and love meeting new people and making new friends, or if it's the fact that I learn something new or am reminded of something I had forgotten, or both!

We arrived Friday March 27, to WINDY but beautiful blue skies, and turquoise waters at the Gulf front Hilton Pensacola. We had our private Gulf front room for a wonderful "Welcome Dinner" where we heard the… Continue

Posted on April 8, 2015 at 9:48am — 1 Comment

Update

  We celebrated Matt's 23rd birthday yesterday!  15 months after diagnosis, we still are endlessly grateful that he is with us. 

    I am looking forward to the future with so much enthusiasm for what is in store for him and all of us, with Soliris being available. 

   For anyone who has not attended a meet up, I encourage you to consider attending.  Putting a face and a hug to someone who has walked your path is unbelievable.  To reassure the family who is new to this disease…

Continue

Posted on December 18, 2013 at 10:40am — 4 Comments

Comment Wall (9 comments)

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At 9:09pm on December 15, 2014, Megan Russo said…

Hi Barbara! I am semi new to the disease. I was diagnosed this summer with aHUS. I've seen the bootcamp though and am getting pretty involved in advocacy work. My case manager asked me if I would be interested in speaking at some of the conferences, so maybe I'll see you at some! They're supposed to be having a few in NY in 2015! 

At 9:00pm on August 22, 2014, Stephanie Clabough said…

Thank you for the welcome Barbara. It has been such a shock to learn of this disease. We parents certainly do have a bond! I am SO thankful for Soliris! I have high hopes my little girl (and all children affected by this) will be OK after all. 

At 10:32am on May 7, 2014, Jill Ziegler said…
Hi Barbara!
Welcome to the site! This is our second family!!!! Glad to hear you will be at the ohio meet up! Looking forward to meeting you. Til then if you have any questions or want to chat, I'm here!!
Jill
At 9:26am on December 4, 2012, Linda Burke said…

Hi Barbara,

Thanks to Jennifer Christopher's interest in connecting with other adult aHUS patients, I've created a new forum for this website - a featured Forum that will keep the issues of adult aHUS patients at the front and center!  So that others may more easily share infomation, I'd appreciate it if you'd consider adding (or transferring) your comments onto this more visible spot.  I've invited others with the message below:

'Our thanks to Jennifer Christopher for starting this important aspect of outreach and discussion among aHUS adults!  Her insight has highlighted a need for a dedicated 'Forum for Adult aHUS Patients', so please visit our newly featured forum for adult aHUS patients to share their journey and to post concerns and questions.

Join the conversation at http://atypicalhus.ning.com/forum/topics/adults-with-ahus .'

At 1:56am on October 15, 2012, Patrick Brophy said…

Hi Barbara. Sorry to hear about your son. I am glad he is out of the ICU. I would be happy to set up some time to talk if you would like. Pat Brophy Univ of Iowa. Please email me at patrick-brophy@uiowa.edu and let me know.

At 12:34pm on October 14, 2012, Svetlana Finley said…

Welcome here, i hope your son will get better very soon, so far i never hear that Soliris doesn't work for treatment. 

At 9:45pm on October 13, 2012, Linda Burke said…

Hi Barbara,

Please consider posting this request for others' stories as a Home Page blog, to highlight your questions - the 'add a blog post' option is at the bottom of the Blog post box.  That will showcase your request for specific information.  W encourage you to connect via ourFoundation  Facebook page as well asto  participate in the conversation at the global aHUS community on RareConnect (see our Links box on the Home Page).

Actually, our family did see the initial 'see saw' of lab values during our son Skyler's first few weeks using Soliris while his body functions were so unstable.  We'd rejoice in a great number for platelets, but then the creatinine would bump up a bit for example. ( My family's story is in the profile of my personal page.)

I can point you to scientific data regarding the effectiveness of Soliris in our research forum and the U of Iowa videos,(also try www.ahussource and www.soliris.net, Alexion websites) but can't address your other concerns. The only journal articles or scientific investigation data that I've seen regarding solid info that Soliris was  ineffective  for a specific case were usually tied to transplantation complications where Soliris was tried as a last ditch effort to save a transplanted kidney, and reports seemed to indicate  that Soliris was given too late in the case's progressive downward spiral.  If  someone on the website has other research, we'd appreciate it if you'd here  list links to those journal articles or studies and share that information.  Looking forward to imroved news from you soon.

At 8:25am on October 12, 2012, Cheryl Biermann said…

Welcome to the aHus family, I am so sorry your son is sick with this!  Ditto to everthing Linda told you.  Soliris is a huge improvement for our patients, thankfully, word is getting out and people are being help before the damage accumulates.  Many of us check the site daily, so if you need to just talk or ask questions, you will probably get a response by the next day, at the latest.

At 12:46pm on October 11, 2012, Linda Burke said…

Hi Barbara,

So sorry to hear that your son Matthew is hospitalized.  Please read the tab 'aHUS Bootcamp' for a detailied overview of aHUS - it will help outline the most important points ofr your adult son.  The Iowa videos from our home Page are another great source of information that should assist your understanding of Matthew's medical situation.  I'm glad that his care team has begun Soliris, and that you've contacted Alexion on your son's behalf.

Additionally, we have set up a 'Doc to Doc Directory'' on our Home Page's left hand column - it lists contact info for volunteer docs with aHUS experience who offer free phone/email consults with other physicians wishing to learn more about this complex rare disease.  Please print/send/share our Doc to Doc Directory's contact info with Matthew's care team in Texas at Ben Taub Hospital Houston Medical (Dr Mark Udden (hemo)  and Dr Sheik-ahmad (neph) and associates).

Please keep us posted, and feel free to add a blog post to our Home Page with Matthew's story and your questions.

 
 
 

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