"I forgot to mention that things work slowly in the medical research world, and we lay people are the last to know, keep your eyes open for new developments and know that many here are doing the same.
Obviously, I am only a parent and in…"
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Kaye Vaughn
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Cheryl Biermann left a comment for Kaye Vaughn"There have been no formal studies yet, however, the University of Iowa is committed to taking information and blood work and even history of the family in their research. This is at the level of conjecture at this point, but the conjecture is…"
Kaye Vaughn left a comment for Cheryl Biermann"I received and accepted your invitation to become a friend. I have been exploring the foundation's website since during the time in August when Hannah was in ICU for so long, and I have forwarded information and links from it to Hannah's…"
Kaye Vaughn left a comment for Cheryl Biermann"Hi Cheryl, I'm Kaye Vaughn, grandmother of Hannah, the aHUS patient, and mother-in-law to Danna Vaughn with whom you have corresponded recently. I'm interested in a reply you sent Danna recently regarding the current thinking on staying on…"
Linda Burke left a comment for Kaye Vaughn"Hi Kaye,
Hope your granddaughter is responding well to her Soliris therapy, we welcome you as you join Danna in wishing to gain understanding about this rare disease. If you haven't checked the Soliris Forum and the tab "aHUS…"
Profile Information
- Birthday
- January 28
- 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.
- N/A
- My child ( or myself as a patient) is best described as:
- Tested but Awaiting Results
Comment Wall (4 comments)
- At 10:10pm on December 23, 2011, Cheryl Biermann said…
I forgot to mention that things work slowly in the medical research world, and we lay people are the last to know, keep your eyes open for new developments and know that many here are doing the same.
Obviously, I am only a parent and in no way qualified to give medical advice, I can only point you in the direction of current thinking.
- At 10:05pm on December 23, 2011, Cheryl Biermann said…
There have been no formal studies yet, however, the University of Iowa is committed to taking information and blood work and even history of the family in their research. This is at the level of conjecture at this point, but the conjecture is there due to the experience of the doctors involved with Soliris. Some doctors are taking the approach of weaning, my fear is low level activity, such as a girl I know personally. Her whole life when she had swelling or even trouble breathing the doctors said she had asthma and allergies. Finally at about 8, she had a "typical" atypicalHUS attack where something was so obviously wrong, mom took her to the hospital where she was finally diagnosed, the level of damage previous to the big attack was cumulative and kidney failure was quick after the obvious attack. (this was told to me by the parent). If the docs working in the research field are hesitant to rush to this option, I see no reason to rush it either.
- At 7:12pm on December 23, 2011, Cheryl Biermann said…
Hi Kaye,
I'm hoping you received my email?
- At 9:08pm on September 13, 2011, Linda Burke said…
Hi Kaye,
Hope your granddaughter is responding well to her Soliris therapy, we welcome you as you join Danna in wishing to gain understanding about this rare disease. If you haven't checked the Soliris Forum and the tab "aHUS Bootcamp", those are great choices to begin your quest for information. Please feel free to post questions as you see fit.
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...
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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