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Danna Vaughn
- Female
- Chattanooga, TN
- United States
- Blog Posts (1)
- Discussions (1)
- Events
- Photos
- Photo Albums
- Videos
Danna Vaughn's Page
Latest Activity
Cheryl Biermann commented on Danna Vaughn's blog post Update" Please have Hannah's doctors contact the doctors on the registry on the home page. Newest findings support keeping patients on the medication, not weaning them off. The goal is for maintaining their health, not fighting new…"
Danna Vaughn posted a blog postUpdate
Hannah is responding wonderfully to the Soliris treatments. She is still receiving them every two weeks (due this Friday). Her kidneys have returned to 100% function, she continues to gain her weight back and is considering enrolling in school after the holidays. Still, the most devastating for her, is the loss of her hair. She is still beautiful, but it's hard to convince her. Very traumatic. Please continue to pray for her as her doctors determine the appropriate time to "wean" her off…See More
Danna Vaughn posted a status"Thanking God for Soliris! Hannah had dose 5 today. No dialysis for almost 3 weeks now!"
Danna Vaughn replied to Lannette Yorgason's discussion Not diagnosed"Ma'am,
It took several doctors close to two weeks to diagnose my niece with aHUS. There were just too many issues and symptoms that did not "match up". They initially diagnosed her with ulcerative colitis and/or Krohn's disease.…"
Danna Vaughn commented on Bill Biermann's blog post Cheryl and Nathan's big day"Special prayers for you and your family! What a big, big day!"
Danna Vaughn left a comment for Cheryl Biermann"Thank you! On the front end, it doesn't look like there is anything to be "at ease" with! Soooo, knowledge is power. I appreciate your willingness to share your experience.
"
Danna Vaughn left a comment for Danna Vaughn"Thank you so much! My family and I are so afraid of what's in store for Hannah. She has had four stable days and the doctors are pleased with her progress. She will get another dose of Soliris on Friday. Our hope is that she will not have…"
Cheryl Biermann left a comment for Danna Vaughn"Hi Danna,
Good to have you here, hope we'll be able to offer you some answers to your questions and put your mind at ease."
Linda Burke left a comment for Danna Vaughn"We welcome new member Danna, whose teen niece has just begun Soliris treatment. Please feel free to post blogs and ask questions. Best wishes, Linda Burke"
Profile Information
- Birthday
- April 4
- 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.
- Yes
- My child ( or myself as a patient) is best described as:
- Not Tested
Danna Vaughn's Blog
Update
Hannah is responding wonderfully to the Soliris treatments. She is still receiving them every two weeks (due this Friday). Her kidneys have returned to 100% function, she continues to gain her weight back and is considering enrolling in school after the holidays. Still, the most devastating for her, is the loss of her hair. She is still beautiful, but it's hard to convince her. Very traumatic. Please continue to pray for her as her doctors determine the appropriate time to "wean" her off…
ContinuePosted on December 13, 2011 at 7:58pm — 1 Comment
Comment Wall (4 comments)
- At 9:59pm on August 30, 2011, Danna Vaughn said…
Thank you so much! My family and I are so afraid of what's in store for Hannah. She has had four stable days and the doctors are pleased with her progress. She will get another dose of Soliris on Friday. Our hope is that she will not have dialysis before then. She had it two days in a row after four days without it, along with a blood tranfusion. Baby steps.......
Your support and input are very important to us!
- At 9:53pm on August 30, 2011, Cheryl Biermann said…
Hi Danna,
Good to have you here, hope we'll be able to offer you some answers to your questions and put your mind at ease.
- At 12:43pm on August 30, 2011,
Jodi Kayler said… - Welcome Danna!
- At 11:31am on August 30, 2011, Linda Burke said…
- We welcome new member Danna, whose teen niece has just begun Soliris treatment. Please feel free to post blogs and ask questions. Best wishes, Linda Burke
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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