The Atypical HUS Foundation

July 2010 Blog Posts (23)

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…

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

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…

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

FALL - New Commencement of Pediatric Clinical Trial for Soliris

As part of Alexion Pharmaceutical's second quarter review, the following information was released this week:

Because we are keenly aware that aHUS frequently affects children, often with devastating consequences, we are working expeditiously to expand our aHUS development program to include pediatric patients.…

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Added by Linda Burke on July 23, 2010 at 5:46pm — 3 Comments

My 6yo Grandson, Benjamin

My daughter Marci has been asking you a lot of questions in reference to her nephew, my grandson, Benjamin. Today I am really sad and just need to vent.

Benjamin has been struggling with A-HUS for a little over 3 months. As Marci has told you, he now has cardiomypathy and along with all the other meds, they have added heart Rx. He had had 3 great wks before this and even went to soccer camp for a few hours a day for a week. We were so excited, then 2wks ago, Ben told his Dad,…

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Added by Virginia (jenny) Aguallo on July 20, 2010 at 5:44pm — 8 Comments

Its that time of year again when the build up to the anniversary of Jacks death infects my every waking moment and destroys my ability to sleep soundly. The 3rd Anniversary is heading my way, I have …

Its that time of year again when the build up to the anniversary of Jacks death infects my every waking moment and destroys my ability to sleep soundly. The 3rd Anniversary is heading my way, I have never slept properly since the day Jack died, I have long forgotten that peaceful sleep I once had which was instantly replaced by bouts of insomnia and restless interrupted sleep patterns I now have. Inside I am in knots, Every day is hard but that fateful day that changes your life totally is…

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Added by Sara Palmer on July 18, 2010 at 10:43pm — 6 Comments

Is this common to have heart problems with this disease?

Thanks for all your prayers for Benjamin. He is stable and we will find out tomorrow if the heart medication is working. They still say this is not related to the Atypical HUS but I find this hard to believe. They are checking the labs with the test you guys recommended and he has a pediatric cardiologist that is working with the other doctors at Levine Children's Hospital in Charlotte North Carolina. We feel helpless because all we can do is just wait. We are still waiting for the factor H… Continue

Added by MARCIA AGUALLO BAKER on July 15, 2010 at 10:10pm — 3 Comments

Anna and fevers


She had cold with fever and we did labs they did went down, but as she got better they went back up dr. put her on antibiotics for ear infection. Yesterday was her last dose and last night she started running fever again. I don't really know what to do, we just had her labs done on Tuesday and they were all normal.

Added by Svetlana Finley on July 15, 2010 at 12:33pm — 4 Comments

Transplant eval

Hi there - here's the post to our carepage - once we start moving forward on this - my carepage updates are probably a little less technical than what makes sense on this page - so I may start just putting the nitty gritty more detailed stuff here - but if I don't - feel free to ask me anything - we are happy to share in the hopes that the info or issues that come up with us on this…

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Added by Phyllis Ann Talbot on July 13, 2010 at 8:37pm — 2 Comments

lil miss chloes labs

lil miss had her apt today and her kidney numbers arent good.. he thinks its because of her meds and fluid intake he says the kidneys might start working better if we decrease blood pressure meds and increase fluids.. she will get labs again on friday to see if these changes improve her kidney function. iam praying that this will help.. if they are not better we will…
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Added by lisa ann peterson on July 12, 2010 at 10:49pm — 5 Comments

Benjamin in serious trouble :(

It saddens me to report that Ben is now in congestive heart failure. His echocardiogram shows his heart to only be working about 20%. Doctors still say that the Atypical HUS is still asleep and this has nothing to do with the disease. We are devastated. The doctors told us today that are only 3 things that can be done or will happen. 1. Try different medication to see if we can at least stabilize the heart and maybe get it to pump a little better. 2. Heart transplant, or 3. Death. How did we… Continue

Added by MARCIA AGUALLO BAKER on July 12, 2010 at 8:46pm — 14 Comments

Minè still in ICU

My little girl is still in ICU because of her high blood pressure. We getting on top of the extra flued but the blood pressure still goes high. She is on 29 blood pressure tablets a day in you count them and the drip which they will stop today to see what will happen. Her kidneys is not improving even thow she is passing more urine her urea and creatinine is still high. She had 6 fit attacks in 12 hours after her brain has swolen and she had water on the brain.and luckily nothing after that.… Continue

Added by Retha Vosloo on July 9, 2010 at 9:23am — 12 Comments

bad test results- probably just a mistake

Our Doc was right. We retested and results came back normal. But I can still feel adrenalin in my vains. Thanks for prayers and thoughts.

Added by Zofia on July 9, 2010 at 4:00am — 1 Comment

Nathan gains a small victory!

When Nathan was approximately three years old, we had to give him dairy creamer for his calorie intake as he refused anything else, even ice cream! We had to put in a g-button feeding tube. This was the best we could do at the time and slowly over time he began to eat socially. Never enough to sustain life. He often went weeks without taking a single bite of anything.

Almost two years ago, it was decided he needed to grow both inside and outside. After consideration, the…

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Added by Cheryl Biermann on July 8, 2010 at 6:52pm — 9 Comments

lil miss chloe hospital stay

well chloe had not been ffeeling well all week she had been running a fever of 103.6 and we could not get it to break we monitored her closely at home with labs and mom.. but her labs got worse her creatnin got higher and she was dehydrated and her hemoglobin and hematocrit got lower and so did her albumin.. so we ended up at the hospital for 2 days and now we will again go back on monday to ensure no relapse is presenting its lil ugly head. we are hopeful that this viral bug that took the… Continue

Added by lisa ann peterson on July 7, 2010 at 10:52pm — 5 Comments

Heart Problem

Just got word from my brother that Benjamin is having problems with his heart pumping blood. It is not working properly and they now say he has no infection in his lungs. He now is on a type of CPAP machine that forces oxygen into his lungs. if this doesn't work, he will have to go on a ventilator. He is also on a medication that is suppose to be able to get the heart working again. This has been devistating to us and we just hope that he turns for the better real soon.

Added by MARCIA AGUALLO BAKER on July 7, 2010 at 10:07pm — 6 Comments

Update on my nephew Benjamin

Hi everyone! It has been a while since my last update on Benjamin. I wish I had good news to post but I am sad to say it isn't good news. Ben did great for about 1 1/2 weeks and he was almost his old self. However, he turned for the worst over the last week. He started complaining that he was having a hard time breathing and even asked to go to the hospital. They performed a bronchoscopy and did some cultures of his lungs. We haven't gotten the results of that back yet. However, his lungs do… Continue

Added by MARCIA AGUALLO BAKER on July 6, 2010 at 9:22pm — 4 Comments

Taligen Therapeutics recognized with Award

In posting this release noting an award for Taligen Therapeutics, I wish additional information was available to offer this aHUS online community. It's been known that Taligen has had some sort of complement inhibitor(s) "in the pipeline" for quite some time, and the buzz was that it might have some potential for aHUS patients. Given the competitive nature of the bioscience community, it's understandable that proprietary information is closely guarded. If anyone…
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Added by Linda Burke on July 6, 2010 at 12:34am — 1 Comment

bad test results.

So we extended times between getting FFP to 10 days. And today her test results are not good. Nothing big, but it seems that 10 days is too long. I try not to panic...

Added by Zofia on July 5, 2010 at 3:30pm — 4 Comments

Vacation, the 4th, and news!

Hi there everyone! Sorry for the extra update this month but a couple of things we wanted to tell you all about and realized that there's something for everyone - all my GA folks are going to be lost on the first paragraph and all you Northern cousins and friends will be lost on the second! Check out the new pics we posted to help explain!…

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Added by Phyllis Ann Talbot on July 5, 2010 at 1:51pm — 8 Comments

Relatives coming to town! And, a very special event I;m taking part in.

While many of us are battling a life-threatening illness, we can enjoy our lives as well. I have relatives coming to town from Waxahache TX for about a month. Since it is difficult for me to travel to them as often as I want, they come here to Buffalo NY to visit with us. As much as they would want us to come see us, traveling isn't impossible, it's not practical or feesible. I would LOVE to go back to Texas to visit them, since I haven't been there since Thanksgiving when I was about 8…

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Added by Jessica Olivia Frysz on July 5, 2010 at 1:47pm — 3 Comments

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IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

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.
  
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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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