The Foundation for Children with Atypical HUS

Seeing Chloe's participation in blood drive events in her area, and Nathan's representation for the Red Cross, and a request from someone about how to start up a blood drive, I thought this might be a good topic for us to discuss. In our case, there was a blood drive already in place at our parish and the Knights of Columbus ran it. They requested that we allow them to help us collect blood for Nathan and have been wonderful to us.

One thing people may not be aware of is that you can have selected and screened individuals who have been determined to be safe donors, blood go directly to your child. These donations are called dedicated donations. This not only insures a safe blood supply, but also limits the antibodies they build up in response to infusions and pheresis. This is important in case your child will ever need a transplant.

In our case, the hospital set aside an entire shelf in their blood bank for Nathan and during the times that he was not requiring so much blood, we released the extra blood that was about to expire to the general population. It was definitely a win, win, win situation. The blood drive drew a lot more people when they had someone to rally around, we were supplied with a safe blood supply and limiting his antibody production and the hospital and patients gained from the excess amount.

If anyone else has insights or tips to running a blood drive, or questions, please feel free to join in this discussion.

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i organize two blood drives a year in chloes honor.. i didnt know that you could set blood aside and chloe only gets infusions now every other week and my blood drive will only supply one day at the hospitals in spokane we get 70 units if blood in our small town that is awsome in a small town. my first suggestion is to talk with the local blood banks recruitment cordinator. chloe is the spokesperson for the blood center.
Yes, Lisa, the blood you set aside would be from the same set of people everytime, the shelf life is about 6 months I think and your doctors will tell you exactly what they want for her...for example we never took type O for Nathan, now with the trouble with women's donations having lots of antibodies, they might also restrict it to male only donors. These donors would be screened carefully by questionaire and also, say you have a friend who would like to give, but you know they are a risk because of multiple sex partners or gay life style or even multiple piercings and tattoos, you could let them go ahead and try but tell the blood drive people, no I think their risk factor is too high for Chloe based on what I personally know.

lisa ann peterson said:
i organize two blood drives a year in chloes honor.. i didnt know that you could set blood aside and chloe only gets infusions now every other week and my blood drive will only supply one day at the hospitals in spokane we get 70 units if blood in our small town that is awsome in a small town. my first suggestion is to talk with the local blood banks recruitment cordinator. chloe is the spokesperson for the blood center.
chloe only recieves male plasma.. the statistics show that the blood we donate at our drives doesnt even supply a days worth in the hospitals that spokanes blood center supplies.. that to me is crazy.. there is such a need for blood.. its amazing how many people do not donate because of fear and they say they dont have time.. i used to always say that i never had time and now i make time and do it.. it sucks that it took my lil miss gettting sick before i realized the importance of donating..

Cheryl Christine Pallme Biermann said:
Yes, Lisa, the blood you set aside would be from the same set of people everytime, the shelf life is about 6 months I think and your doctors will tell you exactly what they want for her...for example we never took type O for Nathan, now with the trouble with women's donations having lots of antibodies, they might also restrict it to male only donors. These donors would be screened carefully by questionaire and also, say you have a friend who would like to give, but you know they are a risk because of multiple sex partners or gay life style or even multiple piercings and tattoos, you could let them go ahead and try but tell the blood drive people, no I think their risk factor is too high for Chloe based on what I personally know.

lisa ann peterson said:
i organize two blood drives a year in chloes honor.. i didnt know that you could set blood aside and chloe only gets infusions now every other week and my blood drive will only supply one day at the hospitals in spokane we get 70 units if blood in our small town that is awsome in a small town. my first suggestion is to talk with the local blood banks recruitment cordinator. chloe is the spokesperson for the blood center.

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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?
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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.
  
• • • • • • • • • • • •
  
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.
  
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