The Foundation for Children with Atypical HUS

All Blog Posts (278)

Search Blog Posts

Kerri Grey aHUS and joint issues

Hi i was just wondering if anyone knows or has experienced whether or not aHUS can be linked with joint issues. I ask because my daughter had an appointment at our childrens hospital yesterday because she can not rotate her arms so that her palms can face upwards. They did xrays and it showed that she has no joint in her elbow and her 2 forearm bones are fused together. We have now been refered to a different specialist and a genetisist because they said that the type of thing she has is commonl… Continue

Added by Kerri Grey on September 2, 2010 at 10:18pm — 1 Comment

Linda Burke ADVOCACY MEETING at Alexion Pharmaceuticals to Discuss aHUS and Soliris (Aug. 5, 2010)

Alexion Pharmaceuticals, makers of Soliris (eculizumab), asked the Biermanns and I to participate in an advocacy meeting on August 5th, 2010 to discuss issues regarding aHUS patients and families. We very much appreciated their kind invitation to visit Alexion Pharmaceuticals in Conneticut to speak with senior staff. In repres

… Continue

Added by Linda Burke on August 31, 2010 at 3:00pm — 5 Comments

Kamal D Shah DNA could not extracted from blood samples

I had sent my blood samples to the Mario Negri Institute in Bergamo, Italy for genetic testing. They could do only the ADAMTS13 gene and for the rest of the tests, they got back saying that the DNA could not be extracted!

I have no idea why. I am really disappointed because I sent the samples in March this year and have been waiting anxiously for the results. The results would have helped me decide about a second transplant (first transplant Nov 1998 - HUS recurrence). A lot
… Continue

Added by Kamal D Shah on August 31, 2010 at 4:25am — 3 Comments

Jessica Olivia Frysz Heading back to college and getting responses for kidney donation

Hi everyone!

I know I'm not on here much, but here's yet another awaited update. I'm enjoying my last full week of freedom before I head back to classes next week on Sept 7th, where I will be taking my place as an upperclassman as a Medaille College senior classman. This is going to be a hectic year, with all the responses I've been getting from people who want to get tested for me to donate a kidney to me. I've been getting emails and phone calls from people from other states.

… Continue

Added by Jessica Olivia Frysz on August 30, 2010 at 12:48pm — 2 Comments

Zofia update on Ania

Ania is doing well. She just turned 8 on Aug. 26th. She gets FFP every twelve days, but we will try to extended times between getting FFP to 14 days and even more. She is on ramiprilum, losartanum kalicum, amlodip… Continue

Added by Zofia on August 30, 2010 at 4:43am — 2 Comments

NATALIE WALLACE Waiting for test Results!

Ben is doing well. He just turned 5 on Aug. 24th. In the hospital CHOP a few times this summer. Treatment FFP and Steroids did the trick. He was home each stay within two days. Much better than before. Still gets FFP every ten days. On lisinapril for BP. That seems to work for him. Waiting for lab results from Iowa from Dr. Brophy. Thanks to this web site… Continue

Added by NATALIE WALLACE on August 28, 2010 at 9:01am — 3 Comments

lisa ann peterson lil miss chloe

lil miss had her check up on wed and well the kidney function is better whoop whoop... her blood pressure is 119/78 and her hemoglobin is 10.6 and her hematocrit is 27 and her platlets are 220 and her albumin is 3.4.. we also found out that the protocol for solaris is supposed to be approved in november i dont know much more but that hopefully by the end of the year she can do the study but she has to relapse first.. i keep hearing diff dates but dr. h said that it should be approved by… Continue

Added by lisa ann peterson on August 27, 2010 at 11:48am — 1 Comment

Phyllis Ann Talbot Latest on t'plant and last clinic info

Hi there everyone - I'm late updating from this last clinic honestly because we are in a bit of a funk. A little bit stalled on the medical stuff - so I'll run through that and then get to the fun stuff ;-).

For the #'s folks - things are rocking along, Potassium of 4.3, phos of 8.5 (this is back up this month so they may change around some meds), BUN 44, creatinine 10.5, Platelets 215 and HGB and HCT down a little to 9.1 and 26.2. We are increasing his Aranesp from every 2 wee

… Continue

Added by Phyllis Ann Talbot on August 27, 2010 at 11:16am — 2 Comments

Kamal D Shah New drug patented that targets Factor H mutations

Has anyone heard about the new drug TT30? I just came across this link:

… Continue

Added by Kamal D Shah on August 25, 2010 at 10:21am — 3 Comments

MARCIA AGUALLO BAKER Ben has the Factor H gene mutation

I finally got to talk to my brother and he said Ben has the factor H gene mutation. He said the type of mutation that Ben has is a very mild form of AHUS. According to his facebook post, they are going to do plasma infusion once a week for a month. The other option that they have is Soliris. The doctors do not seem to think that any of the other children have this but if they do, they do not believe it will become active. He also said that if any of the children or my son gets AHUS, they would i… Continue

Added by MARCIA AGUALLO BAKER on August 22, 2010 at 10:12pm — 5 Comments

MARCIA AGUALLO BAKER Another part of genetic testing back!

Hello everyone! We finally got some of the long awaiting genetic testing back on Ben and it looks like one of the test came back showing it is genetic. I am not sure which factor it is yet because my mom couldn't remember. This makes me very concerned for the other 2 children my brother has. Can anyone please fill me in on what this means when it is genetic? Does both parents have to be a carrier or just one? Also, what about my son. Is there any other family members like cousins that have gotte… Continue

Added by MARCIA AGUALLO BAKER on August 20, 2010 at 8:45pm — 3 Comments

Jessica Olivia Frysz A long awaited phone call, still need to return it.

Well this mroning at 10:50am, I received a phone call from my transplant coordinator. My cellphone was turned off from the night before, so that I could get some decent sleep. She tells me that she has no further information for me, until she gets some more paperwork from one of my other doctors. UGH this is taking such a long time to get some answers around here, I'm trying to find a donor;two of my professors also want to help me out in the perspective, but unfortunately I have to wait unti

… Continue

Added by Jessica Olivia Frysz on August 19, 2010 at 2:02pm — 4 Comments

MARCIA AGUALLO BAKER latest Ben update

Hello everyone! Ben is still holding his own and is such a fighter. He had a really rough night. They tried to decrease his Lasix and developed fluid in his lungs again. He still continues on the Milrinone IV heart medication and 3 other blood pressure medicines. He is on a total of 2 diuretics, a seizure medication, and iron supplement. They had to do 2 more pheresis treatments and tryin to find the right balance has been very difficult. They are discussing the Soliris drug again but not heard… Continue

Added by MARCIA AGUALLO BAKER on August 11, 2010 at 8:31am — 4 Comments

Amy Swarbrick Update on Brody

Hi everybody. It's been awhile since I've posted so I thought I'd give a quick update on Brody. It has been one year this month since his last plasma infusion. Is it possible to hold your breath for a whole year???

Currently we are getting his labs done every two months. Last labs showed his LDH slightly above the normal range. Everything else was good though, including his Haptoglobin and C5 assay. So???

Other than that Brody got his cast off two weeks ago finally. Which now I

… Continue

Added by Amy Swarbrick on August 10, 2010 at 1:04am — 2 Comments

MARCIA AGUALLO BAKER Sad day for Benjamin Family

First I cannot thank all of you enough for all you have done. You have not only helped me but now are helping my mom through this difficult time. She finally was able to post something on the site and all she kept saying was how wonderful you guys are. I am not sure where to start on all the news. First thing is Ben did make it through the heart catherization. His heart is still functioning at around 7%. We were hoping to find the cause but it told us not only was it not bacterial but it is caus… Continue

Added by MARCIA AGUALLO BAKER on August 8, 2010 at 9:02pm — 6 Comments

Kerri Grey Meds for high potassium

I was wondering if anyone of you have used any other treatment other than dialysis to treat high potassium levels as a long term treatment???

Ash has been constantly having high potassium levels and his docs have been using resonium to bring his levels down and that is effective however the docs say this is not a good long term option. I asked Ash's doc if there is anything to treat it with long term other than dialysis and he didnt really give me a straight answer which makes

… Continue

Added by Kerri Grey on August 7, 2010 at 7:22am — 10 Comments

Stacey AHUS recurrence

Does anybody know if AHUS can reccur once your kidneys have already been damaged? My son doesn't seem to have been ill since he 1st went into hospital on June 22nd 2009 (has been on dialysis since). I just dnt know if it would show again and how it would appear as like I said his kidneys have been completely useless for 13 months x Continue

Added by Stacey on August 2, 2010 at 1:06pm — 3 Comments

Virginia (jenny) Aguallo Ben, my 6yo grandson

Today Ben is having a heart cath. He has had aHUS for 4 months now. His HUS is fairly quiet, labs look great. His heart has moved to the front of the line. Due to the fluid in his lungs, they thought initially that he had pneumonia, wrong, it was cardiomyopathy. That was about 5wks ago. With meds, they got his heart to pumping at 25%; two days later back to 15%.

Over the weekend, his heart is only pumping between 7 and 12%. Of course this causing his lungs to be very wet. Incre

… Continue

Added by Virginia (jenny) Aguallo on August 2, 2010 at 11:56am — 9 Comments

Jessica Olivia Frysz Jessie's update

Well, I sit at home on this warm Saturday afternoon doing nothing but listening to music, looking over at my rattie and guinea pig friends, but I'm still here living with aHUS and I feel good that I have overcome many obstacles, so much that I have met a guy on a dating site who understands similarly what it's like to live with a life threatening illness. He, himself was diagnosed with neuroma, which is a serious cancer, but from what I understand is that he is keeping it under control and is

… Continue

Added by Jessica Olivia Frysz on July 24, 2010 at 12:53pm — 2 Comments

lisa ann peterson lil miss chloe

lil miss went to the doc on wed... her hemoglobin and hematocrit are back up sooo yeas are in order there.. her creatnin is sittin higher than it was before she got that last cold its only .67 at and before the cold it was perfect .45 to be exact so iam not quite sure what to think i know its not terriblly high but its more than it was before the cold and but its lower than it was during the cold.. so i was excited that she looks phenominal and is drinking and peeing.. but doctor H called and

… Continue

Added by lisa ann peterson on July 23, 2010 at 10:59pm — 2 Comments

Featured Blog Posts

View All

Latest Blog Posts

Most Popular Blog Posts

Blog Topics by Tags

Monthly Archives

2010

2009

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.

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...

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

Loading…

Get Badge

© 2010   Created by Christy White.   Powered by .

Badges  |  Report an Issue  |  Terms of Service