MARCIA AGUALLO BAKER Female Advance, NC United States: Share on Facebook Share Twitter

Blog Posts (16)
Discussions
Events
Photos (3)
Photo Albums
Videos

MARCIA AGUALLO BAKER's Friends

View All

MARCIA AGUALLO BAKER's Page

Latest Activity

Linda Burke left a comment for MARCIA AGUALLO BAKER

Hope Ben has continued to improve now that he is at home....sending positive thoughts your way!

Sep 12, 2010

Colette Ann Frysz commented on MARCIA AGUALLO BAKER's blog post 'Ben has the Factor H gene mutation'

Marcia, Just to let you know, my family and I are all Factor H deficient. Jessica has atypical HUS. However I also had a rare disease which after much prodding I found is also a factor H deficient disease. It is Guillam Barre syndrome. There are…

Sep 1, 2010

Jessica Olivia Frysz commented on MARCIA AGUALLO BAKER's blog post 'Ben has the Factor H gene mutation'

Marcia- I'm glad to hear that you are getting answers. By the way, when they did the testing did they do the entire family? My parents, my sister and I all have the factor H mutation. Yes, when having the factor H mutation the aHUS is actually…

Aug 30, 2010

Cheryl Biermann commented on MARCIA AGUALLO BAKER's blog post 'Ben has the Factor H gene mutation'

I'm happy they are talking with the doctors in Iowa and Canda! I also, have never heard of being able to predict if the aHUS will be mild or not-obviously, his body took a tremendous hit last time. Maybe what they mean is they believe he will…

Aug 23, 2010

Amy Swarbrick commented on MARCIA AGUALLO BAKER's blog post 'Ben has the Factor H gene mutation'

Just wondering how they know that Ben has a mild from of AHUS? I have never heard that before. I have always been told there is no way to predict how an individual will do with AHUS. My son Brody has a Factor H mutation in SCR 10 (which is not one…

Aug 23, 2010

Linda Burke commented on MARCIA AGUALLO BAKER's blog post 'Ben has the Factor H gene mutation'

Great news that Ben is at home....terrific !! Let's hope that Ben's health will improve as the love of his family and his familiar environment comforts and strenghtens him. Our best to you all !

Aug 23, 2010

Ben has the Factor H gene mutation

I finally got to talk to my brother and he said Ben has the factor H gene mutation. He said the type of mutation that Ben has is a very mild form of AHUS. According to his facebook post, they are going to do plasma infusion once a week for a month. The other option that they have is Soliris. The doctors do not seem to think that any of the other children have this but if they do, they do not believe it will become active. He also said that if any of the children or my son gets AHUS, they would…See More

Blog post by MARCIA AGUALLO BAKER Aug 23, 2010

5 Comments

Phyllis Ann Talbot commented on MARCIA AGUALLO BAKER's blog post 'Another part of genetic testing back!'

Hi - just to throw out there - not sure which cancer drug they are discussing - but I know Jodi Kayler's Coen tried Retuximab (not sure about spelling) a while back which is typically a drug used in treatment of certain cancers - and he had…

Aug 23, 2010

Cheryl Biermann commented on MARCIA AGUALLO BAKER's blog post 'Another part of genetic testing back!'

Adding to what Linda shared, we have two immediate family members and Nathan testing positive for the MCP mutation gene; however, Nathan is to only one to have developed aHUS. The theory is that the location of the mutation on the MCP gene is…

Aug 23, 2010

Linda Burke commented on MARCIA AGUALLO BAKER's blog post 'Another part of genetic testing back!'

Hi there! Regular HUS is often a food-borne illness (think contaminated spinach or undercooked contaminated hamburger) that causes the same devasting results as atypical HUS (also called genetic HUS, recurrent HUS, etc). Usually just one parent is…

Aug 21, 2010

Another part of genetic testing back!

Hello everyone! We finally got some of the long awaiting genetic testing back on Ben and it looks like one of the test came back showing it is genetic. I am not sure which factor it is yet because my mom couldn't remember. This makes me very concerned for the other 2 children my brother has. Can anyone please fill me in on what this means when it is genetic? Does both parents have to be a carrier or just one? Also, what about my son. Is there any other family members like cousins that have…See More

Blog post by MARCIA AGUALLO BAKER Aug 21, 2010

3 Comments

Kerri Grey commented on MARCIA AGUALLO BAKER's blog post 'latest Ben update'

As the others have said if he gets the solaris and it helps to repair the tissue damage in Bens kidneys then hopefully the fluid problem wont be as much of an issue which may also take some of the pressure off the heart as well. I pray that your…

Aug 14, 2010

Heather Still commented on MARCIA AGUALLO BAKER's blog post 'latest Ben update'

Praying for your family.

Aug 13, 2010

Grace commented on MARCIA AGUALLO BAKER's blog post 'latest Ben update'

As you say, the fluid balance is very delicate, and any IV drug will require some adjustment in fluid balance. Hopefully, Soliris should stop HUS activity, allowing a healing space for damaged tissue to repair. But as you know, there is still much…

Aug 11, 2010

Cheryl Biermann commented on MARCIA AGUALLO BAKER's blog post 'latest Ben update'

PLEASE-it can't make anything worse, can it? I think especially because the drug is also having the surprise effect of working like a immuno-suppressant, he will eventually recover if he gets the drug. The heart may not recover, but they may…

Aug 11, 2010

latest Ben update

Hello everyone! Ben is still holding his own and is such a fighter. He had a really rough night. They tried to decrease his Lasix and developed fluid in his lungs again. He still continues on the Milrinone IV heart medication and 3 other blood pressure medicines. He is on a total of 2 diuretics, a seizure medication, and iron supplement. They had to do 2 more pheresis treatments and tryin to find the right balance has been very difficult. They are discussing the Soliris drug again but not heard…See More

Blog post by MARCIA AGUALLO BAKER Aug 11, 2010

4 Comments

Profile Information

Birthday: July 9

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?: Yes

My child ( or myself as a patient) is best described as:: Tested but Awaiting Results

MARCIA AGUALLO BAKER's Photos

Loading…

MARCIA AGUALLO BAKER's Blog

Ben has the Factor H gene mutation

Posted on August 22, 2010 at 10:12pm — 5 Comments

Another part of genetic testing back!

Posted on August 20, 2010 at 8:45pm — 3 Comments

latest Ben update

Posted on August 11, 2010 at 8:31am — 4 Comments

Sad day for Benjamin Family

First I cannot thank all of you enough for all you have done. You have not only helped me but now are helping my mom through this difficult time. She finally was able to post something on the site and all she kept saying was how wonderful you guys are. I am not sure where to start on all the news. First thing is Ben did make it through the heart catherization. His heart is still functioning at around 7%. We were hoping to find the cause but it told us not only was it not bacterial but it is… Continue

Posted on August 8, 2010 at 9:02pm — 6 Comments

Comment Wall (4 comments)

You need to be a member of The Foundation for Children with Atypical HUS to add comments!

Join The Foundation for Children with Atypical HUS

At 11:41pm on September 11, 2010, Linda Burke said…: Hope Ben has continued to improve now that he is at home....sending positive thoughts your way!

At 10:29pm on August 9, 2010, Jodi Kayler said…: For all testing, go through U of Iowa with Dr. Brophy as Linda mentioned on your blog. Just remember, that less than 50% of aHUS cases actually test positive for a genetic mutation. My son, Coen, does not have a genetic mutation but the disease was just as dangerous. My heart goes out to your family. Thank you so much for us to share in Ben's and your family's journey. I cant remember...did your family explore Soliris? Is there an opportunity to try it right now? It is well tolerated and less invasive and stressful than pheresis. I'm wishing and praying for only good news for sweet Ben.

At 1:00am on June 16, 2010, Linda Burke said…: Hi Marcie!
Just checking in to see how Ben is doing - hope everything is good at your end. Best wishes, Linda

At 10:50pm on May 13, 2010, Linda Burke said…: Hi Marci,
Hope to hear some positive news soon with an update on Benjamin's current status - sending best wishes for daily improvements!

No comments yet!

Welcome to
The Foundation for Children with Atypical HUS

Sign Up
or Sign In

WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!

The Foundation for Children with Atypical HUS 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 "About aHUS" tab 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 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.

more factoids...

Help us fight the battle

Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com

Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.

Badge

Loading…

Get Badge

Badges | Report an Issue | Terms of Service