The Atypical HUS Foundation

November 2009 Blog Posts (22)

Thanksgiving

Whew! What a blessed Thanksgiving we had this year! We were able to have the tradiditional meal here at our home again, with Cheryl's whole side of the family. Last year, we weren't able to have it here due to Nathan's problems-so this year about 25 of us, minus Christy and her fiance-working-minus Cassie and her boyfriend-ill & minus Mary Sammantha with a friend, everyone was happy, healthy, employed and rejoicing! The Biermann's are such a large family, you can't fit them all in one place… Continue

Added by Bill Biermann on November 29, 2009 at 12:07pm — 1 Comment

AWESOME THANKSGIVING

I hope that everyone had a great Thanksgiving. My Thanksgiving was awesome! I got to meet my 3 month old cousin Alexis Channing :) She's so precious; didn't get to hold her, because A. I wasn't feeling too great (didn't want to give the little one my germs) B. everyone was hogging her already...lol. My cousin Joey and his wife are her mom and dad, and I can tell that they are very proud of their little girl. Joey often sees me, and says "WOW you're 21 already?" He oftens goes back to the time… Continue

Added by Jessica Olivia Frysz on November 28, 2009 at 8:04pm — 3 Comments

Just a question.....

Hi everyone!!



First I hope that everyone had a wonderful Thansgiving! We have alot to be thankful for :)

This week I started training for Home Hemodialysis! Yeah!!! Tomorrow will be the first time I access Jonathan. He saw me practicing and told me that he believes in me and that he knows I will do great! What a great kid!! He already feels a difference going from 3x a week, to 5 days a week. Today he told me he feels absolutely fantastic! Set up time is just like PD, the only… Continue

Added by Donna Kolp on November 27, 2009 at 11:42pm — 8 Comments

Thanksgiving Wishes

To all ATYPICAL HUS Families,



On this eve of Thanksgiving I reflect on the fact that I am thankful for all the families that have a loved one with atypical HUS. I can be thankful that this disease has taught me what is really important in life. I can be thankful for having met some of you and having talked with others of you. I can be thankful because this disease has taught me to appreciate all the little things of daily living. Though I may not have much materially, I can be… Continue

Added by Colette Ann Frysz on November 25, 2009 at 4:23pm — No Comments

Any information would be helpful

We had our appointment with his regular Dr today. Going in I felt pretty good as he has worked with HUS before in children. When we got there, he started to explain what has been found so far. Matt has the A Typical HUS associated with Streptococcus Pneumoniae and also was told he has Glutathione Deficiency. He was kind to draw a picture of the blood cell and show me kinda how all this works (or doesnt work). We got his blood pressure and took blood again to check his CBC, Electrolytes, BUN… Continue

Added by Kristina on November 25, 2009 at 1:25am — 3 Comments

Thank you all

Thank you to all of you who have reached out to me. Its like we are a family. I am doing amazingly well with all of this. aHUS was very traumatic in the begininng....Jan- June but the last half of 2009 has actually been great. The PD works good for me and I am not sure if I want a transplant at this point. I am open to whatever door God opens for me. I believe everyday that I am here with Chris, my husband and Madeline, my daughter is a precious gift that before aHUS I took for granted. Life is… Continue

Added by Jill Ziegler on November 21, 2009 at 12:05pm — No Comments

Adults with aHUS

I know this is a site for children with aHUS. I am an adult (29) but am looking for support and to learn what I can from anyone who has been through this devistating disease. aHUS took out both of my kidneys and I have been on dialysis since January. I have a 3 year old daughter, who has been my driving force to get better. By the grace of God I am still here with her. She turns 4 next week. Anyway, I look forward to meeting you and learning from you! God Bless!
JZ in Arkansas

Added by Jill Ziegler on November 20, 2009 at 7:11am — 3 Comments

the final journey has come....

Everywhere I look, there is death around me....I even face it every single day. From the time I wake up, to the time I go to bed, I often ask myself "have I really lived my day to the fullest today?" Granted I do often end my day with a dialysis treatment, but I don't regret being alive.



This morning, my Uncle Ray passed away, peacefully and alone, just the way he wanted it. At least, I did get to see him in his final days, that he was able to see me, before he passed. I did get to… Continue

Added by Jessica Olivia Frysz on November 19, 2009 at 5:45pm — 3 Comments

a life full of desastation, and a life full of bravery

Well, this time this blog is not about me(although it should be, but good news) My uncle is losing his battle in the hospital, and I hope (don't want to hope) that he passes peacefully. I understand what is happening, because I have been faced with death so many times, that somehow it seems to keep coming back to me. But, what really gets through these devastations is the animals :) I'm proud to say that my animals get me through so many hard times. My rat, Remy he knows that when I take him… Continue

Added by Jessica Olivia Frysz on November 18, 2009 at 9:24am — 3 Comments

Coen Update

Sorry guys. I leave you a vague update and then never give any details. It has turned out that for some reason, at the hospital, I can't access this website--so I had to wait until I could run home for a few. Here's the whole story:



Thursday Coen said his throat hurt which unfortunately is code for "I don't want to go to school tomorrow". We didn't think much of it since Friday he woke up and didn't say a word. That same day, we finally found a place that has a H1N1 vaccine so we… Continue

Added by Jodi Kayler on November 16, 2009 at 10:56pm — 13 Comments

Chloe's video

OK - if you are on facebook I think this will definitely work and possibly even if you aren't - fingers crossed.

http://www.facebook.com/video/video.php?v=1167478355720&ref=mf

Added by Phyllis Ann Talbot on November 14, 2009 at 9:51am — 1 Comment

MRI with contrast, (Gadolinium) and Renal insufficiency

Did you know, a renal patient should NOT receive an MRI with contrast? There are many reasons for receiving an MRI, those of you with seizure complications may have more reason for an MRI than others. The agent Gadolinium a non-radioactive agent that allows a clearer picture for doctors has also been found to cause Nephrogenic Systemic Fibrosis or Nephrogenic Fribrosing Dermopathy in people with renal insufficiency. This is a man-made disease caused by the renal patient's inability to rid the… Continue

Added by Cheryl Biermann on November 12, 2009 at 11:34am — 3 Comments

update on lil miss

her plasma infusion went well yesterday.. she spiked a fever in the middle of the infusion and it went down after the infusion was over. her labs looked good and we di alot of talking about the solaris we are going to start the approval process but we are going to wait to see if we can get her into the study because it will help other ahus kiddos. dr. h said that if we do the drug out of a study it will only be considered part of a retrospective study which is not controled and chloe is a good… Continue

Added by lisa ann peterson on November 11, 2009 at 9:18pm — 5 Comments

Brandi's Birthday

Today, Brandi turned 12. Oh, how quickly the time flies. If no one new Brandi is a twin, and Brittany doesn't show any signs of having AypicalHUS, which we haven't had her tested yet, but plan on in the future. My babies are growing fast. Brandi has been in good spirits, and things just don't bother her, she takes everything with a smile on her face. Am so thankful for that. That this hasn't changed her personality is a blessing. We are still hopeful to do home dialysis, but she continues to… Continue

Added by Kathy Yates on November 10, 2009 at 2:56pm — 4 Comments

FACEBOOK FANS: iGive.com and You CAN Make a Difference Today !

Actually, everyone reading this can make a dramatic difference in the lives of aHUS patients and their families! How often do you use an internet search engine such as Google or Bing to explore an interest area or to find information on the Web? Do you ever shop online? Join our aHUS patients and families at iGive.com and iSearch.iGive.com and - at absolutely no cost to you- The Foundation for Children with Atypical HUS will receive a cash donation. Here's how it… Continue

Added by Linda Burke on November 10, 2009 at 12:30am — 3 Comments

a little note

our little family is all sick lil miss does not have it and i only have a slight cough but dad and brother are congested coughing and running fevers and having body aches.... arggggggghhhhh.. so on a neat note i typed in dragonfly in the website search spot and i read that blog and i tell you i was crying and had goosebumps and i thought of all the lil ones that have suffered because of ahus.. and then we went to the gala and it was awsome lil misses comercial was so powerful it had alot of… Continue

Added by lisa ann peterson on November 8, 2009 at 11:19pm — 5 Comments

Factor I, H concentrate

When I was reading the slides from the conference I came across the above. I don't really know much about this. On the European Medicines Agency I found out that the orphan designation was granted in 2007 for the development of Factor H and it is thought that the supplementation of purified factor H would alleviate the disease. It also says that the evaluation of the effects of complement factor H in experimental models is ongoing.

It was in 2007...would anybody know whether there's been… Continue

Added by Sylwia Antkowiak on November 7, 2009 at 6:45pm — 2 Comments

My Son Jack is 9 Today - 6 November 2009

If losing a child is not bad enough on its own, their ongoing birthdays deliver a searing pain of there own knowing that you can only imagine what they would look/be like and that happy event takes on a total new meaning of yet another reminder of your loss.

We continue to celebrate Jacks Birthday - just without him. I lay 9 Red Roses at his Grave and send all my love to Heaven knowing that one day I wont have to let him go again.

Added by Sara Palmer on November 6, 2009 at 2:52am — 18 Comments

I am happy to announce that evans labs continue to improve and are all within normal limits..and on wed oct 28th evan had his phoresis catheter removed!! yayyy!! after a long 14 weeks he got to final…

I am happy to announce that evans labs continue to improve and are all within normal limits..and on wed oct 28th evan had his phoresis catheter removed!! yayyy!! after a long 14 weeks he got to finally enjoy his bath time Continue

Added by Cassie on November 4, 2009 at 10:09pm — 7 Comments

We need more answers!

'We are new to all this. We have a son, Ben age 4 with HUS and factor H. We just are at a loss with it all. We lost our son Zach 5 years ago. He would have been 8 this past January. We just need to know more, what we are dealing with. If we have the right treatment, doctors? Any ideas. Please help us.'.

Added by NATALIE WALLACE on November 2, 2009 at 8:21pm — 9 Comments

Monthly Archives

2016

2015

2014

2013

2012

2011

2010

2009

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.

************************

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

Badge

Loading…

© 2017   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service