The Atypical HUS Foundation

October 2010 Blog Posts (19)

Alyssa is out of the OR

Alyssa is not back from recovery yet but her surgeon reports that all went well and she is making urine!!!!Hooray!!!If anyone is interested in the details, please go to Alyssadupdate.blogspot.com. Everything went quite smoothly and I want to thank everyone for their support and prayers. It means so much more than I can express to have this a-HUS Foundation family!

Added by Deborah Deffenbaugh on October 26, 2010 at 3:20pm — 13 Comments

CFH/CFHR1 hybrid

Hi all,

I had sent my blood samples to Dr. Goodship's lab in the UK. They got back to me saying that I had an abnormal form of Factor H called CFH/CFHR1 hybrid. This, they added had an 80% chance of aHUS recurrence after a transplant.

I guess Soliris will help with this as well going by all the news.

Does anyone else here have this genetic abnormality? Any idea what this means?

Thanks
Kamal

Added by Kamal D Shah on October 23, 2010 at 10:03am — 4 Comments

update on lil miss chloe

ok where to start.. lil miss has been having some hearing problems and we took her into the doctor and she failed the hearing exam so we gave her an antibiotic to help with her pertruding ear drums and well it didnt help she took another test today and failed she only got one sound right in her left ear and missed one sound in her right ear. i literally feel like i could crawl out of my skin. hasnt she been through enough crap.. AHUS, hypertension, low blood levels, sleep apnea, vision… Continue

Added by lisa ann peterson on October 21, 2010 at 9:46pm — 4 Comments

Update on Benjamin Aguallo - New Insights to Share

About 3 weeks ago, Ben's platelets began to slowly fall. His platelet baseline is usually in the low to mid 200's. On Monday, October 18, Ben's platelets fell to 100. What preplexed us and the Doctor's was the fact that all of Ben's other labs were holding steady or actually improving. What complicated our evalution was the fact Ben attracted a virus that caused croup that resulted in an overnight hospital stay last Thursday. This is our first cold/flu season, so we obviously…

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Added by Jonathan Aguallo on October 21, 2010 at 2:46pm — 7 Comments

Announcement of aHUS Trial Results

Alexion Pharmaceuticals has announced interim results from its Phase 2 studies investigating Soliris® (eculizumab) as a treatment for patients with atypical Hemolytic Uremic Syndrome (aHUS) for adolescent and adult patients in two… Continue

Added by Linda Burke on October 21, 2010 at 12:21pm — 4 Comments

So sorry for my absence

Sorry, it's been a while since I've been on the site - people must think I've fallen off the face of the earth.

I posted pics for our golf tourney that we held late September. We raised $9000+ again this year for the foundation.

We've been toying with Ryan's infusions and tried spreading them out 4 weeks, but his lab results showed that was too long so we are going back to three weeks again. Hopefully that will keep things stable. Ryan started 6th grade this fall and it is a…

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Added by Heather Still on October 19, 2010 at 4:52pm — 8 Comments

Jose is doing well, Post-transplant with Soliris

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Added by Linda Burke on October 18, 2010 at 10:30pm — 1 Comment

Hello all, I am wondering if anyone on this site has both CFH and FH ANTIBODIES? If you do or you know of anyone that does can you please contact me. It's been awhile for me being on here because we …

Hello all, I am wondering if anyone on this site has both CFH and FH ANTIBODIES? If you do or you know of anyone that does can you please contact me. It's been awhile for me being on here because we have been in and out of the hospital tring to get it under control. Finally after everthing else not working setup 2 a week plasma exchange. I also need to find out more or at least other input on the soliris. Well talk to you soon. Continue

Added by Destiny Floyd-Rakes on October 18, 2010 at 10:23am — 1 Comment

Univ of Iowa Pediatric Transplant

Thanks and congrats! to Kathy and Brandi
As Kathy posted on Oct 7th, 2010 Brandi underwent a successful Pediatric renal transplant using a solaris/plasmaphersis preconditioning protocol developed and approved by the multidisciplinary renal transplant team at the University of Iowa. As a group we are very excited about the potential for moving forward in the management of aHUS. We are happy to entertain questions you may have. Thank you for allowing us to be involved with the foundation and…
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Added by Patrick Brophy on October 16, 2010 at 11:42pm — 7 Comments

Brandi's Transplant

On Oct. 7, 2010, Brandi had her second transplant. We had lost her first transplant due to AtypicalHUS, at the time she wasn't diagnosised as having HUS until after we lost the transplant. Her own kidney's had been so damaged that they were not able to tell what had happen, with the transplanted one, they were able to do a biospy and discovered the cause. Didn't want to say anything until Brandi was out of the woods, so to speak, but as of this morning she is doing super and we are planning…

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Added by Kathy Yates on October 16, 2010 at 12:30pm — 6 Comments

TTP

Is any body here struggling with TTP (Thrombotic thrombocytopenic purpura)? My friends douther just got her tests results, and it is not HUS, but TTP.

Added by Zofia on October 14, 2010 at 1:46pm — 4 Comments

Need for Transplants

I am curious as to how many aHUS patients need transplants? Is it just a matter of time before each will have to endure this or does it depend on other factors?

Added by Sharon Madrid on October 13, 2010 at 4:52pm — 1 Comment

Here We Go...

Our long awaited transplant date is upon us--on October 26th Alyssa will have her transplant with Soliris. We are very excited to begin this chapter of our lives. The past year and 8 months have been grueling and Alyssa's young adulthood very different than what we had always envisioned for her. She is understandably nervous and experiences panic attacks when she realizes this is all about to happen. She is also more ready emotionally than she has been and admits that her brain knows that it is… Continue

Added by Deborah Deffenbaugh on October 13, 2010 at 12:14am — 7 Comments

Transplant continues to move forward (SLOWLY) and we are going to DISNEY!!!

Hi everyone - updating before our next clinic but there's been alot going on around here!

I'll start with the 'business' - we have been going round and round and round on alot of things with the transplant team, our docs, our insurance, etc. since Hyde had his kidney transplant eval and we had a care conference today with our nephrologist and our transplant coordinator and I think we finally have a few answers and a game plan in place. We 'think' we have the experimental drug…

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Added by Phyllis Ann Talbot on October 12, 2010 at 4:41pm — 7 Comments

update on Matt

Sitting here thinking I should write an update for Matthew. He turned the wonderful age of 1 on Aug. 27 and was home with a fever and rash. Way to party, and he did with his big Smile and alittle frosting on the side:) He has been doing pretty good since earlier this year. We always seem to find the bug or virus at least once a month, but nothing the little guy hasnt been able to get rid of. Recently within the last month, we still cant seem to rid that icky rash as it seems to come and go…

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Added by Kristina on October 7, 2010 at 9:32pm — 3 Comments

update

Woohoo! Guess what? We only have to have kidney doc checkups every 6 months now! Tristan weighs a beefy 40 lbs now at 2 1/2 years. He's a tank. He's starting to swallow certain foods. Especially goldfish crackers. But now we have to follow a pretty strict renal diet as he progresses with his eating. We are starting to wean him off of his tube feedings too. So far he's been replacing the bolus we took away. But he is still super picky about his food.

We have to eyepatch his good eye…

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Added by Wendy Flinn on October 6, 2010 at 9:30am — 3 Comments

Marissa's story...

I was so happy to come across this website, as I have been searching for some type of support and information regarding this disease. My 10 year old daughter was recently diagnosed with aHUS. In May of this year I took her to the doctor because it looked as if she had blood in her urine. It was confirmed that she indeed had blood in her urine however for reasons nobody could explain, all tests came back normal, which included blood work, CT's, ultrasounds and UA's. Little by little I noticed… Continue

Added by Sharon Madrid on October 5, 2010 at 12:02pm — 14 Comments

It's a small world!

Today, we had a visit from the newest Child Life Specialist, and as she was familiarizing herself with our family history, and the foundation she seemed very interested in how it all began. When I was finished with my story, she informed me that she had once been a cancer patient here and that her mother started a program called Baskets of Hope.

Baskets of Hope is an organization of volunteers who raise money to fill baskets for holidays for the parents of sick children. Her…

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Added by Cheryl Biermann on October 1, 2010 at 11:52am — 4 Comments

Update on me, Jessie

Well, currently I'm in my senior year at Medaille College, getting ready to go ahead and take my state exam to become an LVT. I'm nervous, but excited at the same time.

On another note, I didn't have a very good treatment on Wednesday :( I ended up getting an infiltrate and my nurses were looking at me to give them an answer of what they should do about it. By the time someone could fix it, it was too late. But, I am doing better now, it doesn't hurt as bad, but I did have to…

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Added by Jessica Olivia Frysz on October 1, 2010 at 9:11am — 1 Comment

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The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

WELCOME - JOIN US!

The Atypical HUS Foundation 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 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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