"Hi Cheryl, Thank you so much for answering my comment. so glad to hear you are all doing well!! I will check on Alexion's website. Thanks so much!!"
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Aida Billingsley
- Female
- Abita Springs, LA
- United States
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Aida Billingsley's Page
Latest Activity
Aida Billingsley left a comment for Phyllis Ann Talbot"Hi Phyllis, just wanted to thank you for your input. I hope you are all doing well! "
Cheryl Biermann commented on Aida Billingsley's blog post Inquiry on possible Soliris side effects...."Hi Aida,
No, we had no changes in anti-bodies only changes in his complement #s getting better. Some drugs can affect platelets, rcs, wcs even if they've been on them awhile.
They put Nathan on an anti-siezure med once…"
Phyllis Ann Talbot commented on Aida Billingsley's blog post Inquiry on possible Soliris side effects...."Hey there Aida! how are you? I haven't seen anything with hyde regarding his antibodies. His platelets actually went way up - but we did the transplant at roughly the same time we started Soliris - so he may not be a good…"
Aida Billingsley posted a blog postInquiry on possible Soliris side effects....
My son Christian started his Soliris infusions in October of 2011. We had clinic in Houston, Tx. yesterday and his Doctor mentioned that he was seeing some unusual changes in his labs. When they did blood work on Christian a few months ago (in order to present him to transplant board) his antibodies were at 20%, last month labs showed his antibodies have gone up every month and he is now at 50% . His platelet count had also gone down some.The only changes in his care has been the Soliris…See More
Aida Billingsley commented on Phyllis Ann Talbot's blog post Question for any of you long term PD folks out there"Hi Phyllis, hope all is well. I was reading about your concern with PD and big boy bed and I remenber those days, it is scary ...just the though of it. When our son Christian was on PD, he was 1 1/2 and we used a velcro belt (we got it from PD nurse…"
Aida Billingsley commented on Jodi Kayler's blog post Calling for Notecard Inspiration!"Oh Jodi that is such a Wonderful idea!! so excited!! I will talk to Christian and my daughter Gabrielle, she is very creative (didn't get it from me) and we will get back you with hopefully some ideas."
Aida Billingsley commented on Cheryl Biermann's blog post update on Alle rgy-?"Oh Gosh Cheryl I was just reading your update, I'm so sorry you guys had to go through that. You said though "can this stupid disease get more complicated"?... so glad you are home. Hang in Cheryl , always keep you guys in my prayers."
Aida Billingsley left a comment for Linda Burke"Hi Linda,sounds like you guys had a great time in NC, that's wonderful. Chocolate covered bacon?!! that's one I've never heard of,lol. yes, I will post some pictures soon! Have a great day! Lots of Love"
Linda Burke left a comment for Aida Billingsley"Hi Aida,
Just got back today from visiting with Steve Greene, who initiated this wonderful website, and I passed along the appreciation for this site voiced by the aHUS parents at the Iowa conference. The weather in Raleigh, NC was glorious and we…"
Teresa G. Craig left a comment for Aida Billingsley"Hi. Yes. Linda is a special sister. Shhh! She's just a tad younger than I, so I've played all of the big sister tricks on her. I was very close to my nephew, Hunter. Linda made sure that he was a big part of our lives, and he touched our…"
Cheryl Biermann left a comment for Aida Billingsley"Yes and just when you think you've got the hang of it your computer starts acting up!"
Aida Billingsley left a comment for Teresa G. Craig"Hi Teresa! thank you. It is nice talking to you, Linda is such an amazing and strong person. She truly inspires me as we go through this journey. I am really glad we had the opportunity to attend the conference. It was really great learning new…"
Profile Information
- Birthday
- June 21
- 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.
- aHus Parent
- My child ( or myself as a patient) is best described as:
- Tested but Awaiting Results
Aida Billingsley's Blog
Inquiry on possible Soliris side effects....
My son Christian started his Soliris infusions in October of 2011. We had clinic in Houston, Tx. yesterday and his Doctor mentioned that he was seeing some unusual changes in his labs. When they did blood work on Christian a few months ago (in order to present him to transplant board) his antibodies were at 20%, last month labs showed his antibodies have gone up every month and he is now at 50% . His platelet count had also gone down some.The only changes in his care has been the Soliris…
ContinuePosted on March 20, 2012 at 10:26am — 2 Comments
aHUS conference
It was really great seeing and visiting with everyone in Iowa!
Posted on October 18, 2009 at 2:27pm — 1 Comment
Comment Wall (7 comments)
- At 8:59pm on October 26, 2009, Linda Burke said…
- Hi Aida,
Just got back today from visiting with Steve Greene, who initiated this wonderful website, and I passed along the appreciation for this site voiced by the aHUS parents at the Iowa conference. The weather in Raleigh, NC was glorious and we made a mad dash to have tons of fun on our long weekend together. My only regret was that I couldn't find the North Carolina State Fair booth selling "deep fried bacon covered with chocolate" - perhaps it's just as well (on oh so many levels)!! Hope all is well at your end, as your profile photo shows you a bit blue and just sorta featureless.... you always look smashing, girl - so post a photo of you and your lovely family! ;D
- At 1:03pm on October 23, 2009, Teresa G. Craig said…
- Hi. Yes. Linda is a special sister. Shhh! She's just a tad younger than I, so I've played all of the big sister tricks on her. I was very close to my nephew, Hunter. Linda made sure that he was a big part of our lives, and he touched our hearts. I miss him so. I wonder how other aHUS aunts and uncles are making it. Sometimes we just need a prayer and a hand on our shoulder. We are so thankful for Skyler, and that everything is stable with him. I love it when Skyler tells me, "That was weird, but Thank You!" My husband Gary and I have 2 grown boys, Linda's nephews Gary Jr. and Colby. Keep in touch! Terry
- At 12:03pm on October 23, 2009, Cheryl Biermann said…
- Yes and just when you think you've got the hang of it your computer starts acting up!
- At 8:00am on October 21, 2009,
Lisa Goble said… - welcome to our "family" =)
- At 8:10pm on October 18, 2009, Linda Burke said…
- Hi Aida,
So good to see you on this interactive site of The Foundation for Children with Atypical HUS - it was terrific to see you again at the conference! I'm looking forward to seeing some pictures of Christian when you have time to add your family's story.
- At 7:27pm on October 18, 2009, Cheryl Biermann said…
- Welcome Aida, it was great finally getting to meet you. I hope you had a smooth uneventful ride back home. We hope to hear from you in our discussions soon, you've been doing this so long...
- At 5:06pm on October 18, 2009, Teresa G. Craig said…
- Hi Aida! Welcome to the site! It is a wonderful place to gain information and support, make friends, raise awareness and work toward a cure for aHUS. Glad that you had the opportunity to attend the conference. Much discussion on this should be forthcoming, once those who have attended return. I'm Linda Burke's sister, Terry. -Auntie to Hunter, pictured w/me, who we lost to the disease, and to Skyler, who was diagnosed last spring and is doing well. Again, Welcome! "Auntie Terry"
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.
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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...
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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.
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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:
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19 Olde Colony Lane
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