-
Carine V
- United States
- Blog Posts
- Discussions
- Events
- Photos
- Photo Albums
- Videos
Carine V's Page
Latest Activity
Cheryl Biermann left a comment for Carine V"Oh, gosh yes, you need to speak to your doctors about the diet. It sounds as if he still has his kidneys? That's great! In addition to it being stinky on dialysis the diet is really a bear-my nursing friend tells her diabetic…"
Carine V left a comment for Cheryl Biermann"Thanks Cheryl. It's been 4.5 years since our son's first episode and just a few months since the second. I think I'm finally understanding this thing. The MCP mutation helped define things for us a bit. We understand the studies are…"
Cheryl Biermann left a comment for Carine V"CV,
I know it is extremely confusing, a great place to begin to understand it all is with the other web-site which is accessible through the button on the top of the home page, About aHUS, and next follow it up with aHUS bootcamp. It is…"
Cheryl Biermann left a comment for Carine V"CV, welcome to our site!
If there can be such a good thing as a good, mutation, MCP is it. Transplants with MCP traditionally enjoy very good success and now we also have Soliris, (Eculizumab), as a back up to transplation, this…"
Linda Burke left a comment for Carine V"Please feel free to ask online members about MCP mutations, or any of the other questions that you might have....I hope you find this website to be a good source of information and insight into aHUS."
Profile Information
- 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:
- MCP (MCP/CD 46)
Comment Wall (4 comments)
- At 12:15am on December 14, 2010, Cheryl Biermann said…
Oh, gosh yes, you need to speak to your doctors about the diet. It sounds as if he still has his kidneys? That's great! In addition to it being stinky on dialysis the diet is really a bear-my nursing friend tells her diabetic patients the be sure to follow there diet because they don't want the diabetes leading the to dialysis, because if they think a diabetic diet is hard they REALLY don't want to go to a renal diet!
What is your son's name? By the way, I've sent you a friend request, that is the way you can send private messages back and forth in case there are things you'd like to keep private.
Cheryl
- At 8:50pm on December 13, 2010, Cheryl Biermann said…
CV,
I know it is extremely confusing, a great place to begin to understand it all is with the other web-site which is accessible through the button on the top of the home page, About aHUS, and next follow it up with aHUS bootcamp. It is also helpful to read some of the blogs after you have a good foundation and the forums, because I've no idea where you are in your journey, you may need to take a look at the dialysis forums as well.
Please ask as many questions as you need to, afterall, we were all there at one point too. It took me three weeks to remember the full name, atypical hemolytic uremic syndrome! Cheryl
- At 9:23am on December 13, 2010, Cheryl Biermann said…
CV, welcome to our site!
If there can be such a good thing as a good, mutation, MCP is it. Transplants with MCP traditionally enjoy very good success and now we also have Soliris, (Eculizumab), as a back up to transplation, this mutation is really as good as it gets. (Sounds ridiculous, I know). We look forward to hearing from you. I hope your introduction to this disease wasn't as horrible as it usually is and that all is well now.
- At 11:56pm on December 12, 2010, Linda Burke said…
Please feel free to ask online members about MCP mutations, or any of the other questions that you might have....I hope you find this website to be a good source of information and insight into aHUS.
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.
Badge
© 2012 Created by ALPHA MARKETING.
Powered by 
.
