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sally rakes
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- Mannford, OK
- United States
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Destiny's fight.
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Hello My name is Sally my daughter went and is growing threw the same thing. We just found out today that she also has the factor H. We will pray for you and your family. If you have any questions or vice a verse just let us know.
My heart breaks each time there is someone diagnosed with this awful disease. I offer you my hopes and prayers that things will get better
Hi Sally, thanks for your story i think we all been tru this when first diagnostics and relapse it most hardest part, then u just have to keep eye on everything any changes to catch on time. We be able to save Anna's kidney by catching her relapse o…
Keeping Destiny and you family in our prayers. Are the doctors still doing plasma exchange now that she is out of the hospital?
Thank you for sharing Destiny's story. Sounds like you've been through the ringer. Continue the prayers and keep going one day at a time.
I hope each day brings greater health and wellness and blessings for Destiny and her family! (and everyone reading this)
Hi Sally, it's good to hear your story;though heart-breaking. I would like to assure you that MOST times the first attack is the worse-the doctors are on top of it as soon as they see things going south. You've been through the wringer, now, hopeful…
In Nov of 2009 got sick. I thought it was the flu we went to the hospital and she was admitted on the18th to the ICU at St. Frances Children Hospital we were there for 3 weeks they then sent us to OU's Children's hospital. We got there on Dec 9th 20…
Profile Information
- Birthday
- June 2
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- Are you medical personnel or a researcher with an interest in aHUS issues?
- No
- My child ( or myself as a patient) is best described as:
- Tested but Awaiting Results
Sally rakes's Blog
My beautiful Daughter Destiny
In Nov of 2009 got sick. I thought it was the flu we went to the hospital and she was admitted on the18th to the ICU at St. Frances Children Hospital we were there for 3 weeks they then sent us to OU's Children's hospital. We got there on Dec 9th 2009, and left on Jan 15th 2010. While we were there we were in the ICU twice because of the blood pressures she got as high as 186/132 she had a stroke and lost her vision for awhile (still has some… Continue
Posted on March 8, 2010 at 5:53pm — 6 Comments
Comment Wall (3 comments)
- At 9:30pm on March 15, 2010,
Theresa Pereira said…
- Keep the faith even thru the toughest days.
You are not alone and prayers and well wishes are with you.
I wish her good health and may this be her last "episode"
- At 10:44pm on March 8, 2010,
Linda Burke said…
- Hi Sally,
It's great that Destiny is now home and doing much better - such a frightening time to discover that your child has a rare disorder that even the docs are unfamiliar with, not to mention the lack of info available at most online sources. We'll do the best we can to share our experiences, providing you with real-life situations to help explain the disease process for aHUS. As you sift through the site, you might find points of interest that provoke questions...please don't hesititate to ask our Members for clarification or details. Wishing your family the best, Linda
- At 8:40pm on March 8, 2010,
Cheryl Biermann said…
- Sally, welcome to this site, I hope sharing your story about your precious Destiny and reading the blogs here are a comfort to you. Now you have so Many people praying for her! Please feel free to offer any comments or join in any discussions as you see fit, please take a look at A Parent's Perspective as it may have vital information you've not yet needed, but it sounds as if you've become an expert in a short time...Also, you might want to make the Soliris Forum your next stop and have your doctors look at the doc to doc registry. Your hospital name sounds familiar, so maybe the doctors there are already on top of this for you...welcome and God bless.
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 2010 genetic testing and treatment.
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 2010 genetic testing and treatment.
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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