The Atypical HUS Foundation

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

  • Lisa Grooms
  • Kathy Kennedy
  • Jennifer Schroeder
  • Brett Lettiere
  • Dustin G. Wiggins
  • Kimberly Tressler
  • Judy Warner
  • Diane schaller
  • Michele Haymes
  • debbie thelwell
  • Selma Bennett
  • Monica D. Keleher
  • Rob P
  • Mary Lee Neuberger
  • Cindy Meyer

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!

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

Anna and Soliris

Anna just finished her 4th week Soliris treatment. She is been doing very well, less complains about headaches or any kinda pains (back, knee, tummy) and NO blood and protein in her urine. We start Soliris with her labs been good except her urine and we are glad even for this little thing that we don't need to worry. She will continue to get Soliris for about 6 mo. then we will make decision what will be our next step.

Posted on May 18, 2012 at 11:44am — 2 Comments

Update on Anna Finley and questions

It is been crazzy here seems one thing after another. She had her ear surgery in December, then in January she started having back pains and blood and proteine in her urine. Then in February she had stomuch paint to the point she totally stoped eating doctors  diagnosed her with Lactose intolarance, telling me she cant have any dairy product and putting her on 3 different medications for it. I looked up on internet about Lactose intolarance and finding out Anna never had any of the simptoms…

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Posted on April 4, 2012 at 5:17pm — 4 Comments

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…

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

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

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…

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

Comment Wall (43 comments)

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At 8:58pm on October 27, 2014, Linda Burke said…

So good to see you in Iowa, wish we'd had more time to catch up.  Can't believe how grown up Anna is - lovely!

At 11:13pm on February 18, 2014, Kathy Kennedy said…

Hi Svetlana - thanks so much for making a comment & adding me as a friend.  It is nice to have a "friend" on here.  I watched the video about Anna & loved it.  She loves like an absolutely wonderful girl with a great spirit! 

At 10:27pm on November 28, 2012, Kimberly Tressler said…
Dance is going well. She made it through class tonight but is tired. Also next week will be last physical therapy appointment.
At 4:19pm on October 14, 2011, Ryan Still said…
hey Svetlana Finley how is Anna doing
At 4:26am on October 12, 2011, Monica 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 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 Still said…
6 medals nice
At 5:14pm on August 15, 2011, Ryan Still said…
How many medals has she won
At 3:59pm on August 14, 2011, Ryan Still said…
Hi Svetlana how long has Anna been doing gymnastics
At 8:34am on May 10, 2010, Elizabeth 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
 
 
 

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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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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...

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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.)

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