"So sorry that life has thrown you even more mountains to climb. I wish you the best of luck in you're ongoing recovery and know that you are a fighter and will most likely do things that the doctors never imagined you could. Hang in there...you…"
-
Pearl Lewis
- Female
- Ellicott City Maryland
- United States
- Blog Posts
- Discussions
- Events
- Photos (4)
- Photo Albums
- Videos
Pearl Lewis's Page
Latest Activity
Cheryl Biermann left a comment for Pearl Lewis"Pearl, Hi there! I was so sorry to hear you've had such a rough time this year. One of our sons also broke his back-but without all the medical issues you have. Praying next year is looking up up & up for you and yours."
"I've lived here for the last five years. Two of my adult children have A-HUS and my husband died in 2007 due to juvenile diabetes, a renal transplant and than cancer caused by the transplant drugs. Remember if you child of any age make sure…"
"Unfortunately I broke my neck and back and have had 4 life threatening surgeries since Dec. I am in a brace until Feb. and use a walker and may or may not be able to drive agan. I have nurse around the clock since with an ostomy I cannot take care…"
Heather Still left a comment for Pearl Lewis"Hi Pearl. I haven't heard from you in a very long time. Hope all is well with you and your family. Enjoy the new website - it's great. Linda and her family/friends did a wonderful job in creating this."
Linda Burke left a comment for Pearl Lewis"Thank you for joining this newly launched interactive website for The Foundation for Children with Atypical HUS. For those of you not familiar with Pearl's achievements, she has put tremendous efforts into advocacy for kidney issues and been a…"
Phyllis Ann Talbot left a comment for Pearl Lewis"Hi there - I think my mother-in-law had seen your name on some older website info a year ago or so when my son first got sick! We live in Georgia - just north of Atlanta - but my husband is from Columbia, MD and his parents still live there and his…"
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
Pearl Lewis's Photos
Comment Wall (6 comments)
- At 7:35am on September 16, 2009, Heather Still said…
- So sorry that life has thrown you even more mountains to climb. I wish you the best of luck in you're ongoing recovery and know that you are a fighter and will most likely do things that the doctors never imagined you could. Hang in there...you are in our prayers.
- At 6:08pm on September 15, 2009, Cheryl Biermann said…
- Pearl, Hi there! I was so sorry to hear you've had such a rough time this year. One of our sons also broke his back-but without all the medical issues you have. Praying next year is looking up up & up for you and yours.
- At 8:51am on September 1, 2009, Heather Still said…
- Hi Pearl. I haven't heard from you in a very long time. Hope all is well with you and your family. Enjoy the new website - it's great. Linda and her family/friends did a wonderful job in creating this.
- At 5:53pm on August 31, 2009, Linda Burke said…
- Thank you for joining this newly launched interactive website for The Foundation for Children with Atypical HUS. For those of you not familiar with Pearl's achievements, she has put tremendous efforts into advocacy for kidney issues and been a huge support to aHUS families throughout the years. We extend a warm welcome to this site, Pearl.
- At 4:34pm on August 31, 2009, Phyllis Ann Talbot said…
- Hi there - I think my mother-in-law had seen your name on some older website info a year ago or so when my son first got sick! We live in Georgia - just north of Atlanta - but my husband is from Columbia, MD and his parents still live there and his 4 brother's live within a half hour of there. Just funny when I see Ellicott City - my husband went to Centennial high school. Anyway - welcome to this site!
Phyllis
- At 2:56pm on August 31, 2009,
Svetlana Finley said… - Welcome here ;-) How u doing?
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 
.
