The Atypical HUS Foundation

I was able to attend the family conference sponsored by Global Genes in Seattle this weekend. What a great event. The whole conference was run perfectly from delicious food to great accomodations and thorough information. Dr. Ruth McDonald was a rock star and I could have listened to her speak for hours. I am so very thankful for her and so many doctors that are putting so much of their time and energy into the study of this disease. Even though I had been to a conference last year, I still learned so much and met knew people and gained so much from their stories. One of the things that hit me is how blessed we are with my son Ethan, his quick diagnosis and start on soliris has given him his kidney function back and a much easier time dealing with this. I almost feel guilty for this because of so many of you and your children that have gone thru so much more devastating treatments and outcomes while soliris was being developed. i can only truly thank you from the bottom of my heart- your hardships have paved the way for patients like my Ethan to get to recovery quicker. I cannot express the gratitude I have for you and I hope to pay it forward by doing all I can to continue to find a cure or even better treatment. Loves to you all. 

A few key points that stood out to me even though they may be so simple or obvious to the rest of you. I often panic when one of my other children complain of a stomach ache- that was our onset. I stress over not wanting to rush them in and worry until it passes. This question was brought up and an amazing mom had a great answer for how she handles it: taking what you know about ahus out of the equation, would i rush my child to the doctor? this simple thought process relieved so much worry for me and made sense. i know it will always be in the back of my head and i'll keep a closer eye on them, but my girls won't be dragged into the clinic with every tummy ache. 

also there was a great social worker Dr. Maya Doyle that was fantastic in everything she said. she talked a lot of starting them on the path of independence (depending on their age). Talking to her after I mentioned that as Ethan is almost to taking all meds by a pill or tablet (almost no more compounding!!) maybe we could have him fill his pill box each sunday night. she very much liked that idea and then advised to have him take one set by himself (in charge of taking them), slowly adding to his daily routine. she also mentioned to make sure that the pills are in a public space like the kitchen- so that they have their independence to take them, but i can keep an eye out to make sure they were taken. i found this advice helpful.

another thing that stood out to me was the emotional struggles each patient faces. especially the teens- it has got to be so hard to be "normal" and fit in and not have to worry about how this would affect your future. these teens are pretty tough but we all have breaking points. i'd like to think about how we can help them- maybe an older patient assigned to them as a mentor, maybe a way to get these teens (and kids and adults) together for a day of fun and no worries- to connect and bond. in not so many years ethan will be a teenager (yikes!) and i know that he will face struggles. 

i could hang out with patients and caregivers all day- so much to learn, to share and to move forward. i am very excited about iowa and any other conference i can manage to get to. if you can find a way to one of them- go! it will be an amazing experience for you!

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Comment by Cheryl Biermann on June 6, 2014 at 11:02pm
So happy to have you, Anne, on our team, we'll have to schedule another phone call. Would have done so, but I have had laryngitis for over a week. I guess I'll have to break down and go to the doc.
Comment by Phyllis Ann Talbot on June 4, 2014 at 2:21pm

Anne - thanks so much for taking time out of your schedule to so ably represent the Foundation!  We really appreciate it!

Comment by Caryn Combs on June 2, 2014 at 11:33pm

Anne - you did a great job as a speaker and I think everyone was blessed by the experience!  It was very informative as well - I have a few things I need to follow up with my son's doctors now.  This was my first conference and I encourage everyone to attend one if at all possible - it was great.

Comment by Linda Burke on June 2, 2014 at 9:12pm

Thanks for being the Foundation's representative at this great Global Genes Meetup!  Can't beat great info given by a 'rock star' aHUS expert physician like Dr. Ruth McDonald and getting a better understanding of the social, family, and emotional impact of a chronic disease like aHUS from a stellar presenter like Dr. Maya Doyle.

Thanks to all who attended, and please share your feedback if you've attended an aHUS regional meeting.

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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 "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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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 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...

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Your tax-deductible purchase of one or more bracelets will directly fund research to help 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 our research efforts of the Foundation for Children with atypical HUS at www.atypicalhus.org and www.atypicalHUS.net


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:

Foundation for Children with Atypical HUS
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 Linda@atypicalhus.org


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