"So happy for you, Ivette!"
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Ivette Rios
- Female
- Woodside, NY
- United States
- Blog Posts (2)
- Discussions
- Events
- Photos (3)
- Photo Albums
- Videos
Ivette Rios's Page
Latest Activity
Linda Burke commented on Ivette Rios's blog post Bye Bye Stomi"Thanks for the update, Ivette - good to hear that your surgery went well. May your life contain smoother sailing along less stormy waters..."
Cheryl Biermann commented on Ivette Rios's blog post Bye Bye Stomi"You keep that attitude, Ivette. I admire your attitude, good luck in school and everything else, you're a champ.
"
Ivette Rios posted a blog postBye Bye Stomi
Finally a chapter has closed in my life. I no longer have my colostomy and I truly miss it. Although it was a long process due to infection inside the incision luckily it wasn't as bad as the sergeants thought it would be. On March 26 my life came back to be what I've been wishing for , for approximately 6 months and i'm beyond glad God has gavin me the chance to see myself progress. It doesn't matter if i'm an a-typical HUS patient cause nobody said life would be easy , so as a normal teenager…See More
Cheryl Biermann commented on Ivette Rios's photo
IMG_3865
"Thanks for your picture, Ivette, it helps to have a face to go with your name. You're looking pretty even in a hospital gown, how did you manage that one?"
Cheryl Biermann commented on Ivette Rios's blog post Just a little summary ."Thanks for sharing your story, Ivette. Pretty scary stuff you went through. We are so happy to have you here, any time you feel like adding your two cents worth, go right ahead. It's really good for the other kids to see…"
Jessica Rios commented on Ivette Rios's blog post Just a little summary ."I'm so proud of you for finally opening up and sharing your story, this can help others the some way it helps you to learn about their journey with atypical HUS. I admire your courage and strength. Love you!"
Ivette Rios posted a blog postJust a little summary .
Im only 15 yrs. old and around early October I was diagnosed with Atypical H.U.S. This journey has not been quite easy for a teen , but I have faith everything will get better. On September 16, 2011 I had surgery due to a perforation in my colon and now I have a Colostomy. At first it wasn't easy to accept this new concept but luckily mine is reversible. All of this occurred in Toronto, Canada Sick Kids Hospital . It was on a family road trip which didn't end up so well . The sickness started…See More
Linda Burke left a comment for Ivette Rios"Hi Ivette,
Welcome to the website, Jessica wrote that you've been reading the site for information - hope it is useful to you as a patient."
Profile Information
- Birthday
- August 2
- 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
Ivette Rios's Photos
Ivette Rios's Blog
Bye Bye Stomi
Finally a chapter has closed in my life. I no longer have my colostomy and I truly miss it. Although it was a long process due to infection inside the incision luckily it wasn't as bad as the sergeants thought it would be. On March 26 my life came back to be what I've been wishing for , for approximately 6 months and i'm beyond glad God has gavin me the chance to see myself progress. It doesn't matter if i'm an a-typical HUS patient cause nobody said life would be easy , so as a normal…
ContinuePosted on April 20, 2012 at 8:52pm — 3 Comments
Just a little summary .
Im only 15 yrs. old and around early October I was diagnosed with Atypical H.U.S. This journey has not been quite easy for a teen , but I have faith everything will get better. On September 16, 2011 I had surgery due to a perforation in my colon and now I have a Colostomy. At first it wasn't easy to accept this new concept but luckily mine is reversible. All of this occurred in Toronto, Canada Sick Kids Hospital . It was on a family road trip which didn't end up so well . The sickness…
ContinuePosted on December 26, 2011 at 7:00pm — 2 Comments
Comment Wall (1 comment)
- At 11:35pm on December 24, 2011, Linda Burke said…
Hi Ivette,
Welcome to the website, Jessica wrote that you've been reading the site for information - hope it is useful to you as a patient.
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.
************************
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
For pearl bracelet orders, please allow extra time for processing checks.
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