"Thanks so much Cheryl. I contacted her Nephrologist too and also made her appt a month sooner to see him, which is for the last week of this month. So far her energy level is still good, that was also a big indicator for her as…"
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Sharon Madrid
- Female
- Raymond, WA
- United States
- Blog Posts (7)
- Discussions (1)
- Events
- Photos (13)
- Photo Albums (1)
- Videos
Sharon Madrid's Page
Latest Activity
Cheryl Biermann commented on Sharon Madrid's blog post Marissa Update"keep her under close watch, if that is her "sign" don't pass it off as maybe allergies. Look for all the classic things, you can check for puffiness elsewhere by pressing her arm or leg to see if they stay dented longer than…"
Sharon Madrid commented on Jessica Rios's blog post Update on Ivette"What wonderful news!! How exciting!"
Sharon Madrid posted a blog postMarissa Update
Just a little update on Marissa, she is doing well and still in love with her horse Chief. She is down to getting labs once every two months now, and doesn't even need me to sit beside her while she has her blood drawn anymore. Yesterday my son, her older brother noticed that her eyes were pretty swollen and alerted me to this. That was what got our attention when we were trying to put all the unusual symptoms together a couple years ago. I took her in for labs again yesterday, even though…See More
Sharon Madrid commented on Linda Burke's video
Genetics and aHUS Judith Goodship
"These videos are great....full of information. I won't be able to attend the conference next month in Iowa unfortunately, and hope that there will be videos generated from that conference as well."
Sharon Madrid commented on Bill Biermann's blog post FDA Approval for Soliris (Eculizumab) REJOICE !"Answered prayers!!!!
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Ryan Still left a comment for Sharon Madrid"Hey Sharon I have not started school yet but I am going in 7th grade in September 1st"
Sharon Madrid left a comment for Ryan Still"Hi Ryan, Marissa is doing well. She has yet to start up a profile on here because she has been pretty busy with her new horse. There are only a couple weeks of summer vacation left for her, she starts 6th grade on September…"
Ryan Still left a comment for Sharon Madrid"I have enjoying my summer and summer is better than school"
Sharon Madrid left a comment for Ryan Still"Marissa said to say "Thanks" Ryan, she is going to start up a page tomorrow so she can chat with you and the other kids your age :) How's your summer going? I hope you have been enjoying it!"
TAMARA FERNANDEZ MEGIAS commented on Sharon Madrid's blog post Genetic Results...."Sharon thank you for sharing your story with us!"
Sharon Madrid commented on Sharon Madrid's blog post Genetic Results...."Theresa, plasma-pheresis is what worked for Marissa, thankfully. She started on dialysis and the plasma-pheresis both 4 times a week at first, then by the end of the first month was taken off dialysis and after four months was taken off…"
Profile Information
- Birthday
- September 6
- 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 child ( or myself as a patient) is best described as:
- Tested but Results are Inconclusive
Sharon Madrid's Photos
Sharon Madrid's Blog
Marissa Update
Just a little update on Marissa, she is doing well and still in love with her horse Chief. She is down to getting labs once every two months now, and doesn't even need me to sit beside her while she has her blood drawn anymore. Yesterday my son, her older brother noticed that her eyes were pretty swollen and alerted me to this. That was what got our attention when we were trying to put all the unusual symptoms together a couple years ago. I took her in for labs again yesterday, even…
ContinuePosted on March 12, 2012 at 10:41am — 2 Comments
Genetic Results....
Hello to all of you! I am first of all happy to report that Marissa is doing wonderful since stopping the plasma-pheresis is November. She is still in remission, we are so thankful! Still of course is on 3 different meds for her high blood pressure, but it is being controlled. This summer she has been in swimming as much as she can, and she also has just got her first horse, Chief. I have no doubts that he will be some great therapy for not only her but me too! She has such a love for…
ContinuePosted on July 19, 2011 at 9:44pm — 7 Comments
iGive.com
I just wanted to say that shopping through the iGive is such a wonderful way to not only contribute to the aHUS foundation but also to raise awareness. I prefer to do the majority of my Christmas shopping online, and with all of the stores that will contribute a percentage of your purchase to aHUS foundation, it makes shopping through this site a breeze!
Posted on December 7, 2010 at 4:17pm
Update on Marissa.....Post-port removal
First of all I want to thank all of you for your concern in helping us make a decision in Marissa's care. I appreciate your knowledge and experiences from your own stories. Marissa's is one of three patients that her doctor is currently treating for this disease, and although I am not happy to have other going through this too, I am relieved that she is not his first.
On the morning of Friday the 12th of November, Marissa recieved one more plasma pheresis treatment, and later that…
ContinuePosted on November 22, 2010 at 4:06pm — 8 Comments
Comment Wall (6 comments)
- At 4:03pm on August 14, 2011, Ryan Still said…
- Hey Sharon I have not started school yet but I am going in 7th grade in September 1st
- At 9:07pm on August 9, 2011, Ryan Still said…
- Hey Sharon how is Marisa
- At 11:54am on August 7, 2011, Ryan Still said…
- I have enjoying my summer and summer is better than school
- At 7:02pm on August 6, 2011, Ryan Still said…
- Hey sharon tell Marisa I said to enjoy swimming
- At 12:28pm on October 13, 2010, Cheryl Biermann said…
- Hi!
I hope to have my internet up and running this week, and we can become better acquainted then...
- At 9:00am on October 5, 2010,
Linda Burke said… - Welcome to the interactive website of the Foundation for Children with Atypical HUS, we look forward to hearing your family's story.
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.
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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
For pearl bracelet orders, please allow extra time for processing checks.
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