The Atypical HUS Foundation

January 2011 Blog Posts (13)

Good grief!!!!

So - we shouldn't really be surprised - since we began this journey Hyde has always managed to make this as complicated as it's possible to be!

So the good news - Aunt Sarah and Uncle Warren made it safely here from Pennsylvania through the millionth snow storm of the month apparently and it's supposed to be 60 and sunny here.

Bad news - typical - Hyde's been pretty well for the last 6 mths going to preschool, going to church and Kids Kingdom, we pull…

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Added by Phyllis Ann Talbot on January 28, 2011 at 2:56pm — 8 Comments

So far so good

Well,

After a little bit of confusion yesterday we went down to Egleston bright and early this morning for Hyde's first Soliris (Eculizimab) infusion as well as all his pre-op stuff. The infusion went well - he got the medicine over about 2 1/2 hrs and was busy watching TV and eating pancakes and later syrup and butter with a spoon - ughhh. he needed the food since they took SO much blood for the poor little guy - between the pre-transplant labs as well as alot…

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Added by Phyllis Ann Talbot on January 25, 2011 at 4:19pm — 8 Comments

6 long years with out Zach!

 

Zach's 10th b-day was Jan 18 he passed away three days later on the 21st. due the flu.

Never diagnosed!  We will have a diagnosis for Ben someday. That is my life long goal until it is achieved! I owe it to Zach.

 

Added by NATALIE WALLACE on January 23, 2011 at 11:11am — 5 Comments

Lil miss chloe

Well lil miss had her apt on thurs and the plan is we are stopping the Epogin dr h hopes that Chloes levels will get low enough that she will fit the criteria for solaris. Her ldh needs to get to 700 and doc thinks that might happen if we stop controlling her levels with Epogin due to her disease being 13%active at all times he feels it might bring the levels to criteria level. The thing Iam not excited about is watching my lil miss get sick and not feel.. We are watching her closely and will… Continue

Added by lisa ann peterson on January 22, 2011 at 11:43pm — 5 Comments

Just a Question?

Hello all, I  just wondering and this is for the ones that are on Soliris when you started the treatmeants what was the ctn levels. I was just wondering if anyone has started when ctn levels were at a high level. Also is there anyone that is doing 3x a week plasma Exchange? Lots of blessings and prayers to you all.

Added by Destiny Floyd-Rakes on January 18, 2011 at 3:51pm — 6 Comments

The time is here - we think

OK so I kept trying to wait until we knew for absolute certain and then I realized there's always going to be something that can come up and throw us off track so here's the news.

After many ups and downs and ups and downs over the last month - Warren (Hyde's uncle, our brother-in-law) worked his butt off and resolved the items that had come up at his 2 day eval last month. He got the final approval to donate last week from the surgeon - Yippeee!!! So now it's…

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Added by Phyllis Ann Talbot on January 15, 2011 at 11:09am — 11 Comments

lil miss chloe bug

 well we made it home before christmas thank god... lil miss healed well from all that went haywire after surgery on her tonsils and adnoids for those that dont know we spent nine days inpaitent after her surgery she was having problems they thought that maybe she had aspirated some blood during surgery and that caused some atelectisis in her lower left lobe she required 5 liters of o2 from tues to sat in the picu.. then we went to onc till thursday she caught a…

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Added by lisa ann peterson on January 13, 2011 at 12:04pm — 1 Comment

5 years

5 years ago today, we fall below… Continue

Added by Nicolas on January 10, 2011 at 3:30pm — 2 Comments

Respecting your Privacy

Every now and again we all face crossroads and hope that our decision-making skills are at their finest. 

Personally, I prefer fun little decisions about frivolous matters that pertain to gift choices .......or whether my new winter hat borders a bit too much towards 'eccentric lady who probably lives with a dozen cats' rather than the lighthearted  'zany, carefree Mom with a zest for life' look I was going for!

Protecting the privacy of website members…

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Added by Linda Burke on January 8, 2011 at 12:00am — 2 Comments

Broken bones and aHUS

So...here's the latest....Lydia has broken her fifth metatarsal bone in her foot. Of course, as an over-achiever;)' it's snapped all the way thru a little near the base of the bone about mid-way down the side of her foot. And here's the newest thing I learned about this disease....people with renal issues usually tend to heal slower than people without. Great. Fabulous. Something else to "wait and see" on. There seems to be a diff in opinion whether or not to cast or operate with some screws.… Continue

Added by Lisa Goble on January 7, 2011 at 5:25am — 4 Comments

My Blog

www.kidneysnotincluded.blogspot.com

My journey of kidney failure and aHUS.

Added by Jill Ziegler on January 5, 2011 at 5:37pm — 2 Comments

Without treatment

Just a quick question....

Does anyone have a child  who never required plasma infusion, exchange or Soliris to help get out of an "episode" or relapse?

Added by Theresa Pereira on January 5, 2011 at 12:30pm — 6 Comments

Update on testing........

Hello All - Happy New Year.

Health and Happiness :)

 

Just to bring you up to date, we are waiting for test results from Germany on anti FH antibodies, will be sending blood to France Jan 11th for MCP (Membrane cofactor protein), beyond the selective mutation analysis already performed in Italy a few years ago and platelet aggregation testing here in Montreal.

Germany and France testing is very new type of tests so that is…

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Added by Theresa Pereira on January 5, 2011 at 11:06am — 1 Comment

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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.
  
• • • • • • • • • • • •
  
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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