The Foundation for Children with Atypical HUS

 

Sorry everybody for not posting for a while. I was very busy with work and getting ready for a trip, which I took this past weekend to California. The trip I took was to go to an event sponsored  by the Renal Support Network (RSN) called the Renal Teen Prom. Yes, I know I'm not a teen anymore, but this event is for patients 14-24 years old. This event is like no prom you or I have ever attended at our high schools. This prom is a big party!!! Hundreds and I mean HUNDREDS of kidney patients go to this event to have a good time amongest many who go through the same thing they do. It was awesome being able to just go have a good time and not feel like I don't belong among the people I was with, because we all go through the same thing.

 

I was able to meet some celebrities while I was there : Jack Black, Brad Ellis ("Glee") and Ann Lopez. I hope to have pictures soon, or even be able to view the photos online on the website soon. I was interviewed by a newscaster there in CA and they were stunned to hear how long I have been on dialysis and where I came from. When I said Buffalo, they were like "oh you must be glad to be here..." hahaha I said yea this weather is nothing compared to what the weather is in Buffalo.

 

All in all this was a great opportunity for me to go to CA, because I did make new friends. I made friends with the family I was staying with, which is good if next time I head to CA I need a place to stay I can give them a call.  I had a fun time at the prom most of all, being able to dance the night away. I even had a videographer following me around while I danced.

 

 

And, if there are any parents on this site with teens and are looking to do this, you can check out the RSN website at www. rsnhope.org this even is put on by Lori Hartwell, who founded the Renal Support Network. I think this prom is a great way for kidney patients to get together to just have a good time away from their difficult lives, just to have a night to be "normal" in other words. 

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Comment by Selma Bennett on January 23, 2012 at 10:08am

Wow! Sounds like a wonderful time! So happy you were able to take part in such a fun activity! Can't beat sunny California!

WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!

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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