The Atypical HUS Foundation

'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.'.

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Comment by Jessica Olivia Frysz on November 5, 2009 at 11:00pm
Hi Natalie,
I, myself have factor H mutation, and have been on dialysis since I was 11 months old. There isn't a whole lot of information out there about the Factor H deficiency. What is the verdict for his condition? Is he going to need dialysis, are his kidneys ok yet? But, some patients are doing plasmaphoresis, but in my case, I am doing hemodialysis 3 days a week, for 3 hours, again have been doing this since I was 11 months old. I can't really give you the answers whether or not you are doing the right thing as treatments, but count on your doctors, and if you think something is not right, ask them, they will help in the best way that they can. But, I have been living with this disease for 21 years now, and just found out a couple years ago that I have the factor H mutation. If you ever have any questions, please don't hesitate to ask.
Comment by Donna Kolp on November 4, 2009 at 11:49pm
Welcome!!
My son Jonathan was diagnosed at age 8 1/2 mos. He is now 17, and has been on dialysis since he was 4. He receives plasma transfusions 3x a month. This site is wonderful, and I am happy to be a part of it. You realize that you are not alone in this fight against this horrible disease.
Take care,
Donna :)
Comment by Melissa Hearn on November 4, 2009 at 12:37pm
Welcome!! You are certainly in the right place. My son, Bryan was diagnosed with aHUS at age 4 mos. and is now 8 mos., at home and doing very well on Soliris. Please ask whatever questions you want, and know that this is a WONDERFUL place to find knowledge and support from parents who are where you are, and know what you're going through.
Comment by Heather Still on November 3, 2009 at 8:12am
Welcome to this website and you've come to the right place for support. My son Ryan has been battling aHUS for 7 years now. Please view his story on my page and feel free to contact me and I will help where I can. It's an awful illness, but there has been progress made in research and treatment in the last few years. Best wishes.
Comment by Sara Palmer on November 3, 2009 at 2:31am
Hi there, you sound like a fellow UK dweller (from your names!). Firstly welcome to the site, I know you will receive the warmest of welcomes and you will get support, help and advice from others fighting aHUS on behalf of their little ones. Not sure where you are in the UK, I am based in Cambridgeshire and my Son Jack received treatment at Nottingham Hospital at the Specialist Kidney Unit, there is also a lady on here whose Daughter is being treated at Great Ormond Street. I sadly lost my Son in August 2007 to this disease aged 6, I have a Daughter who is 7 and I have not had her tested but at the present time shows no signs of having it. Like Linda on here she lost her Son and has her other Son with aHUS so she will completely understand your struggles better than anyone. Please feel free to contact me if I can be of any help at all.
Comment by lisa ann peterson on November 2, 2009 at 10:46pm
welcome to this website.. my little girl is 5 and has been battling ahus with a factor h mutation for a year and a half.. iam very sorry to hear of your loss of your other son. feel free to ask any qestions you might have and i know from experience that the parents on this website will give their experiences. the parents on this website have helped me in so many ways. i will tell you one thing about this disease is that i have found is ahus has a mind of its own and it doesnt work on our time..before this website i thought i was alone so i read all the research i found on this disease and i asked alot of questions. i have full trust in our kidney doc he has so far done what is best for my daughter and he always asks how i feel about things he is going to try. please remeber you are not alone in this battle..
Comment by Amy Swarbrick on November 2, 2009 at 10:43pm
It is an overwhelming feeling dealing with a child who has an illness but you and your family are not alone. All of us here on this site are dealing with and going through the same things. My son Brody was diagnosed just this March at the age of 11 months, he also has factor H. We have not yet gotten our 3 year old daughter tested. To scared I guess....When was Ben diagnosed? What type of treatment did he or is he receiving?
Comment by Linda Burke on November 2, 2009 at 10:27pm
Hi Natalie,
Welcome to the interactive website of The Foundation for Children with Atypical HUS, where you have indeed found a community of dedicated parents to support you and give you insight into their family's experience with atypical HUS. If you check out the tabs at the top of this page, you'll find a quick reference to aHUS basics but The Foundation's director, Bill Biermann, has much more detailed information on www.atypicalhus.50megs.com and you can click on that URL on the Home Page 'Links Box". This interactive website was launced this summer and so we are still gathering new Members on a daily basis.
While very few of us are medical personnel, we can relate the journey of our family's aHUS treatments/issues and can direct you to medical resources that may be able to answer specific questions or consult with your child's specialists. Feel free to elaborate, to view other's posts for commonalities (use the Search Bar above the cute Bubble Faces), and to ask questions or give comments. We're here for you.....
Comment by Svetlana Finley on November 2, 2009 at 9:52pm
What treatment does Ben gets?
U can look in forums, some gets plasma exchange, some get plasma transfusion. There is also Soliris, that one is the best option, but it is hard to get insurance approval. U can connect with Linda she can give u some ideas on that.
My daughter receives plasma exchange and we waiting on research to start for pediatric or until she turns 12.

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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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