Jooste Vermeulen's Page
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Linda Burke left a comment for Jooste Vermeulen
Hi Jooste,
Hope everything is fine since your last email. Best wishes, Linda
Jooste Vermeulen left a comment for Retha Vosloo
Hi Retha,
My personal email is jooste@polka.co.za and my cell is 0768972021 Please give ma a call.
Jooste Vermeulen left a comment for Retha Vosloo
Hello Retha, ek is in Kaapstad en ons seun Rijk is al 4 jaar met aHUS. Byt vas julle gaan OK wees. Wat is julle nr? My Cel is 0768972021 By my asb of ek sal jou bel. Rijk was ook 14 dae in ICU en hy is daardeur.
Cheryl Biermann left a comment for Jooste Vermeulen
Oh, so sweet. Thank you for sharing your story. You are in the right place, did you know our main researcher, Dr. Smith also has experience with Dense Deposit Disorder. It is good to have you here, perhaps this site will prove to be some comfort to…
Jooste Vermeulen left a comment for Svetlana Finley
Hi, yes Rijk still gets peritoneal dialysis every day. We don't know for how long. Might be life long or when his body is big enough to risk a simultaneous liver/kidney transplant.
Svetlana Finley left a comment for Jooste Vermeulen
Love your son's pictures, he is soo cute!!! Is he still getting treatments?
Amy Swarbrick left a comment for Jooste Vermeulen
Sorry to hear about your son's factor H mutations. He is such a doll. My son Brody has a mutation in scr 13 of his factor H gene. Brody will be 2 on April 2nd. Welcome to the site.
His Factor H protein has two errors. One in the 20th SCR and one in the 3rd. Last one means he has Dense Deposit Disorder.
Status posted by Jooste Vermeulen
Hi everybody. I'm glad to be here with you all and to share our story of Rijk. He has aHUS and DDD.
Status posted by Jooste Vermeulen
Jooste Vermeulen updated their profile
Jooste Vermeulen updated their profile photo
Svetlana Finley left a comment for Jooste Vermeulen
Welcome here!!! This site is awesome i hope u will find help and support here ;-)
Profile Information
- Birthday
- April 1
- 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:
- Factor H (CFH) /Protein (Gene)
Jooste Vermeulen's Photos
Comment Wall (4 comments)
- At 11:51pm on February 6, 2011,
Linda Burke said…
Hi Jooste,
Hope everything is fine since your last email. Best wishes, Linda
- At 12:04pm on March 10, 2010,
Cheryl Biermann said…
- Oh, so sweet. Thank you for sharing your story. You are in the right place, did you know our main researcher, Dr. Smith also has experience with Dense Deposit Disorder. It is good to have you here, perhaps this site will prove to be some comfort to you. Please join in and share as much as you would like, oh and welcome!
- At 1:08am on March 10, 2010,
Svetlana Finley said…
- Love your son's pictures, he is soo cute!!! Is he still getting treatments?
- At 12:17am on March 10, 2010,
Amy Swarbrick said…
- Sorry to hear about your son's factor H mutations. He is such a doll. My son Brody has a mutation in scr 13 of his factor H gene. Brody will be 2 on April 2nd. Welcome to the site.
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...
• • • • • • • • • • • •
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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