"Hey, thought I would say hi and see how you all are doing, we reached the two year mark of our diagnosis. I still think of your family and pray that all is well. - Terry Huber and family"
Jonathan Aguallo's Page
Latest Activity
Linda Burke commented on Jonathan Aguallo's blog post Inquiry"Jonathan,
I thought it best to answer in detail with this blog: http://atypicalhus.ning.com/profiles/blogs/ahus-complications-potential-impact-for-multiple-organs. ; Hope it provides a starting point for exploration of this important topic."
Cheryl Biermann commented on Jonathan Aguallo's blog post Inquiry"Yes, I believe if you watch to University of Iowa's parent conference video on this site, you will hear all about it, I think Carla Nester is who presented this newer information. She has the slide with the iceberg. This slide is very helpful…"
Jonathan Aguallo posted a blog postInquiry
I have noticed in a few posts the reference that aHUS while in apparent remission can cause damage to other organs. Can someone share where this is coming from? Thanks
Jonathan Aguallo commented on Linda Burke's blog post Share your video in support of Rare Disease Day!"Thank you Linda... loading them right now. Thanks for all you do..."
Jonathan Aguallo commented on Linda Burke's blog post Share your video in support of Rare Disease Day!"Linda, I have a video to post. I might need to help. I uploaded to YouTube but couldn't figure out how to upload to the Rare Disease YouTube channel...."
Jonathan Aguallo commented on Melissa Hearn's blog post Pictures of AHUS kiddos PLEASE"We would be more than happy to send a few pictures. Just tell me where to send them."
"Thank you! Same to you and your family this holiday season!"
Linda Burke commented on Jonathan Aguallo's blog post Merry Christmas and Happy New Year"Wishing you all the best in 2012......"
Jonathan Aguallo posted a blog postMerry Christmas and Happy New Year
The Aguallo Family would like to wish everyone a very Merry Christmas and aHUS free New Year! We love each and every one of you!See More
Jonathan Aguallo commented on Destiny Floyd-Rakes's blog post Starting Soloris."Destiny,
Thanks for sharing. We hope Soliris is the answer! Please keep us posted."
Jonathan Aguallo commented on Cheryl Biermann's blog post No Title"So sorry to hear this news. Hopefully, it is something not too harmful...."
Jonathan Aguallo commented on Bill Biermann's blog post FDA Approval for Soliris (Eculizumab) REJOICE !"I am so proud of everyone involved. This is a great day for our small community! "
Profile Information
- Birthday
- July 5
- 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)
Jonathan Aguallo's Photos
Jonathan Aguallo's Blog
Inquiry
I have noticed in a few posts the reference that aHUS while in apparent remission can cause damage to other organs. Can someone share where this is coming from? Thanks
Posted on March 13, 2012 at 8:11pm — 3 Comments
Merry Christmas and Happy New Year
The Aguallo Family would like to wish everyone a very Merry Christmas and aHUS free New Year! We love each and every one of you!
Posted on December 23, 2011 at 8:13pm — 2 Comments
Update on Ben Aguallo
We wanted to take a moment to give you guys an update on Ben. Today, we reached another milestone. The doctor's are starting to ween Ben off of most of his blood pressure medications. We will stop Lasix as of tomorrow. Overall, Ben seems to be in good health. We have noticed that if we push his plasma infusions beyond 10 days or so, platelets seem to be more in the low 200 range than in the mid to upper 200s. We aren't quite sure what that means, but it is a trend and one we are going…
ContinuePosted on September 19, 2011 at 6:09pm — 2 Comments
Long Over Due Update on Ben
First, the Aguallo Family extends our heartfelt thoughts and prayers to those recently diagnosed or currently struggling to keep this disease and all that comes with it under control. Each time we see a new member or an update detailing a struggle our heart aches.... Please know you can always reach out to our Family!
It has been a few months since we updated you on Ben's Status. As many of you know, we keep a Facebook Page "Get Well Ben Aguallo", but we haven't updated…
ContinuePosted on July 27, 2011 at 9:05pm — 1 Comment
Comment Wall (9 comments)
- At 11:19pm on August 27, 2011, Linda Burke said…
- Thinking of your clan and hoping that y'all are doing fine post-Irene.....
- At 12:16pm on May 19, 2011,
Vicki Ravely said… - sorry I am so late in responding. Had a knee replacement in January and hadn't been on this site for quite a while. Paul is still on Soliris, his high BP issues continue (unlike the others on Soliris who's BP stablilized). Paul does not have the H factor, so that may be the difference, they are continuing to monitor and change meds. Please feel free to contact me. Vicki
- At 11:49pm on March 18, 2011, Linda Burke said…
Hope Ben's feeling better now. Viral exposure and common colds have swayed Skyler's labs all over the place for 2 months...just got back the first full 'good' set of labs this week. Nothing major or alarming, just enough to concern us - all our aHUS families know this dark cloud of uncertainty all too well.
Keeping your family in my thoughts and prayers, Linda
- At 8:36am on February 7, 2011,
Colette Ann Frysz said… - Jonathan, I'll be happy to answer whatever questions you may have. I'll answer as best as I can whatever you ask.
- At 9:51pm on January 8, 2011, Linda Burke said…
- Hope that Ben's doing well and that you've heard some positive news regarding Ben's progress over the last few days!
- At 10:34pm on September 28, 2010, Linda Burke said…
- Love the profile photo! ;-D
- At 4:13pm on September 18, 2010, Cheryl Biermann said…
- Hi, and Welcome!
- At 10:49am on September 18, 2010,
Jodi Kayler said… - Jonathan, Welcome to the community. I hope Ben and your family is finding a little bit of normalcy (if that is possible) since being at home. My son, age 7, (Coen) and has had HUS since he was 11mos old. Much of Coen's story is in the Soliris forum if you are interested. Let me know if you have any questions.
- At 2:37pm on September 15, 2010, Linda Burke said…
- Welcome to the website! As Ben's father, your family has been in our prayers. We're glad to hear that Ben's begun 1st grade and is doing well !
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 "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.
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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...
• • • • • • • • • • • •
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
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