The Foundation for Children with Atypical HUS

Svetlana Finley
Svetlana Finley
  • Female
  • Salem, OR
  • United States
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Svetlana Finley's Friends

  • Selma Bennett
  • Monica D. Keleher
  • Rob P
  • Mary Lee Neuberger
  • Cindy Meyer
  • Nicolas
  • Sharon Madrid
  • Terry Huber
  • Joseph J Krug MD
  • Wendy Flinn
  • Elizabeth Farrell
  • Lisa Barker
  • Nick Fornetti
  • Theresa Pereira
  • Crystal Ferreira

Svetlana Finley's Discussions

Platelets aggregation

Started Dec 29, 2010

Leg cramps
3 Replies

Started this discussion. Last reply by Cheryl Biermann Sep 13, 2009.

 

Welcome, Svetlana Finley!

Latest Activity

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Svetlana Finley commented on Melissa Hearn's blog post 'Pictures of AHUS kiddos PLEASE'
I can send u some of our pictures, let me know what email to send to.
yesterday
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Grace commented on Svetlana Finley's blog post 'Update on Anna Finley'
I'll keep Anna in my prayers. It's so frustrating when things are not right and there are no answers ....  Shortly before I had my first relapse, my plts were higher than ever (>400) -- I wonder if it is a compensatory mechanism…
Wednesday
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Update on Anna Finley

Hi everyone,First i want to sat Thanks to Cheryl for keeping updating on Anna and thanks everyone to continue praying for her.Anna is full of mistery, no one knows what is going on with her right now. All her labs are good except blood in her urine, her Platelets are normal it looks like everytime we do labs they r higher and higher hmmm... She has some back pains and not eating very much.Yesterday we were first ones to see our doctor and last ones left her office during that time they did all…See More
Blog post by Svetlana Finley Jan 31
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Ryan Still left a comment for Svetlana Finley
hey Svetlana Finley how is Anna doing
Oct 14, 2011
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Monica D. Keleher left a comment for Svetlana Finley
Hello Svetlana -was so great to meet you at the meeting!  Thank you for the friend invite :)  Take care, Monica
Oct 12, 2011
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Monica D. Keleher and Svetlana Finley are now friends Oct 12, 2011
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Selma Bennett left a comment for Svetlana Finley
Yes! It was so great to meet you too! Glad you made it home safe and sound. Still trying to process all the information we got at conference. A time full of tears, many smiles and lots of hope!    
Oct 11, 2011
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Svetlana Finley left a comment for Selma Bennett
It was awesome meet you at conference!!!!
Oct 10, 2011
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Svetlana Finley commented on Destiny Floyd-Rakes's blog post 'Starting Soloris.'
Thanks for update!! We sure missed you at conference and we will be praying that Soliris will be working.
Oct 10, 2011
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Svetlana Finley left a comment for lisa lea
Hi Lisa, Welcome here!!!
Oct 10, 2011
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Svetlana Finley commented on Nicolas's blog post 'October : News from France'
Awesome news!!! Now u have to catch up with her ;-) Keep us updated
Oct 10, 2011
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Svetlana Finley commented on Bill Biermann's event '2011 Parent Conference'
Thanks Linda, I got one too, does anyone want to share room? I guess they have 2 beds and i don't need 2 LOL See you all in 2 weeks
Sep 27, 2011
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Svetlana Finley commented on Svetlana Finley's blog post 'What hotel for conference?'
It looks like no one yet thinking where to stay? I guess we should wait another week to get hotel booked?
Sep 20, 2011
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Svetlana Finley commented on Bill Biermann's event '2011 Parent Conference'
It looks like no one yet thinking where to stay? I guess we should wait another week to get hotel booked?
Sep 20, 2011
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Svetlana Finley commented on Jonathan Aguallo's blog post 'Update on Ben Aguallo'
Thanks for udate!!! Awesome to hear Ben doing well.  Anna is the same situation with platelets. If they get below 200 them it is usualy sign of relapce. 
Sep 20, 2011
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Melissa Hearn commented on Svetlana Finley's blog post 'What hotel for conference?'
We haven't booked anything yet.  Let you know. . .
Sep 20, 2011

Profile Information

Birthday
October 8
Do you have a friend or family member diagnosed with aHUS?
Yes
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My child ( or myself as a patient) is best described as:
Tested but Awaiting Results

Svetlana Finley's Photos

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Svetlana Finley's Blog

Svetlana Finley

Update on Anna Finley

Hi everyone,

First i want to sat Thanks to Cheryl for keeping updating on Anna and thanks everyone to continue praying for her.

Anna is full of mistery, no one knows what is going on with her right now. All her labs are good except blood in her urine, her Platelets are normal it looks like everytime we do labs they r higher and higher hmmm... She has some back pains and not eating very much.

Yesterday we were first ones to see our doctor and last ones left her office…

Continue

Posted on January 31, 2012 at 7:48am — 1 Comment

Svetlana Finley

What hotel for conference?

I am wondering those who coming to the conference what hotel everyone planing to stay? I would like to stay where other will be staying, so we can carpool.

Posted on September 15, 2011 at 10:21am — 4 Comments

Svetlana Finley

Update on Anna and CD46

Hello everyon!!!

It's been awile since i updated on Anna. She is been doing well and enjoying gymnastics. Today we had our visit with our doctor, Annas labs continue stay where we like them too. They took her off blood pressure medication one medication less ;-) We also had disscation on some testing they did in the begining this year so she is positive for CD46 and she just below range for Factor B normal for it was 20-51 and hers is 19, so our doctor dosen't know really if that is…

Continue

Posted on September 12, 2011 at 11:48pm — 2 Comments

Svetlana Finley

Anna and fevers


She had cold with fever and we did labs they did went down, but as she got better they went back up dr. put her on antibiotics for ear infection. Yesterday was her last dose and last night she started running fever again. I don't really know what to do, we just had her labs done on Tuesday and they were all normal.

Posted on July 15, 2010 at 12:33pm — 4 Comments

Svetlana Finley

Update on Anna

Anna is been doing well, it is been 2 month with out treatment. She still takes iron supplement and lisinopril for BP. She still has some blood in her urine with dip stick it showing 2+ and little bit protein. Rest of her labs looks great even sometimes she looks soo pale it will go thru my mind "if she is ok". We praying that she won't relapse anymore. We still getting her labs done every 2 weeks, our next dr. app on May 24.
She is back to gymnastics, but having hard time to catch up with…
Continue

Posted on April 29, 2010 at 1:32am — 6 Comments

Comment Wall (41 comments)

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At 4:19pm on October 14, 2011, Ryan StillRyan Still said…
hey Svetlana Finley how is Anna doing
At 4:26am on October 12, 2011, Monica D. KeleherMonica D. Keleher said…
Hello Svetlana -was so great to meet you at the meeting!  Thank you for the friend invite :)  Take care, Monica
At 7:58am on October 11, 2011, Selma BennettSelma Bennett said…

Yes! It was so great to meet you too! Glad you made it home safe and sound. Still trying to process all the information we got at conference. A time full of tears, many smiles and lots of hope!

 

 

At 1:46pm on August 23, 2011, Ryan StillRyan Still said…
6 medals nice
At 5:14pm on August 15, 2011, Ryan StillRyan Still said…
How many medals has she won
At 3:59pm on August 14, 2011, Ryan StillRyan Still said…
Hi Svetlana how long has Anna been doing gymnastics
At 8:34am on May 10, 2010, Elizabeth FarrellElizabeth Farrell said…
Hi Svetlana
Thanks for sharing that information.It's good to know that episodes can be that far apart.I hope your daughter is making a good recovery. Liz
At 12:42pm on May 4, 2010, Peg ReillyPeg Reilly said…
Thanks for wecoming me Svetlana. Peg
At 12:13pm on April 29, 2010, Lisa BarkerLisa Barker said…
Hi soliris isnt an optiom for me, i havent heard of it before but they cant actually find the faulty gene in me so dont know what to do help prevent the HUS coming back. I did try rituximab after my first transplant but it didnt work and it was vey expensive. I am currently not on the transplant list as im not seen as a good cause as so many are waiting in englands for one. x
At 1:47am on March 10, 2010, Jooste VermeulenJooste Vermeulen said…
Hi, yes Rijk still gets peritoneal dialysis every day. We don't know for how long. Might be life long or when his body is big enough to risk a simultaneous liver/kidney transplant.
 
 
 

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 "About aHUS" tab 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.
  
• • • • • • • • • • • •
  
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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