"Hi Jessica,
Just checking in - I believe that Ivette was scheduled for colostomy reversal surgery at the end of last month. Hope she did well and that the surgery was a success, Linda"
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Jessica Rios
- Female
- Woodside, NY
- United States
- Blog Posts (1)
- Discussions (2)
- Events
- Photos (3)
- Photo Albums
- Videos
Jessica Rios's Discussions
Soliris side effects
3 Replies
Happy New Year everyone! I have a question about soliris...I'm wondering if anyone has seen a significant change in hair loss. My sister started with soliris in the beginning of November and a couple…Continue
Started this discussion. Last reply by Cheryl Biermann Jan 5.
Jessica Rios's Page
Latest Activity
Sharon Madrid commented on Jessica Rios's blog post Update on Ivette"What wonderful news!! How exciting!"
Cheryl Biermann commented on Jessica Rios's blog post Update on Ivette"Yay! We are so excited for you all! I bet lots of the kids relate to Ivette's "Stormie", Nathan insisted we take pictures of his feeding tube, a constant life support system for ten years. That is a great update,…"
Jessica Rios posted a blog postUpdate on Ivette
All is good with Ivette. She received good news yesterday. She has gained four pounds!!! So now weighing at 97, she's happy to add on some extra pounds and go back to wearing her clothes (before atypical hus episode). She got the green light from her doctor to go back to school! After two days of sitting outside the counselor's office she finally went back to the everyday routine. Her school has accommodated her with an elevator pass, she isn't obligated to participate in physical education,…See More
Cheryl Biermann replied to Jessica Rios's discussion Soliris side effects"My child is transplant with Soliris, he is not experiencing any hair loss, but I do know that dialysis patients sometimes suffer from this hair loss because of mal-absorbtion or lack of copper and other elctrolites in their systems. …"
Jessica Rios replied to Jessica Rios's discussion Soliris side effects"Well, she's also on Lovenox...I guess I just wanted to be sure. Her doctor told her it's probably stress but I wanted to hear about other children that are on Soliris. Thank you for your response! "
Phyllis Ann Talbot replied to Jessica Rios's discussion Soliris side effects"hmmmm - my son Hyde has been on Soliris since Jan of last year and I can't say that I've noticed any effects to his hair? Sorry! not sure if your sister is on any other meds that could cause this? "
Jessica Rios posted a discussionSoliris side effects
Happy New Year everyone! I have a question about soliris...I'm wondering if anyone has seen a significant change in hair loss. My sister started with soliris in the beginning of November and a couple of weeks ago we noticed she looses a lot of hair. Any help or feedback would be greatly appreciated. Thanks!See More
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!"
Jessica Rios left a comment for Linda Burke"Thank you Linda. My sister Ivette is being treated in Cohen's Children's Hospital in long island, NY. I definitely have found many answers to our many questions from visiting this website. Thank you!"
Linda Burke left a comment for Jessica Rios"Welcome Jessica, we hope you find this website useful. Where is your sister being treated?"
Profile Information
- Birthday
- October 8
- 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
Jessica Rios's Photos
Jessica Rios's Blog
Update on Ivette
All is good with Ivette. She received good news yesterday. She has gained four pounds!!! So now weighing at 97, she's happy to add on some extra pounds and go back to wearing her clothes (before atypical hus episode). She got the green light from her doctor to go back to school! After two days of sitting outside the counselor's office she finally went back to the everyday routine. Her school has accommodated her with an elevator pass, she isn't obligated to participate in physical education,…
ContinuePosted on March 6, 2012 at 10:47am — 2 Comments
Comment Wall (2 comments)
- At 8:21am on April 20, 2012, Linda Burke said…
Hi Jessica,
Just checking in - I believe that Ivette was scheduled for colostomy reversal surgery at the end of last month. Hope she did well and that the surgery was a success, Linda
- At 12:21am on December 24, 2011, Linda Burke said…
Welcome Jessica, we hope you find this website useful. Where is your sister being treated?
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...
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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
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