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Martha L. Rusche
- Female
- Atlanta, GA
- United States
- Blog Posts (1)
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Martha L. Rusche's Page
Latest Activity
Cheryl Biermann commented on Martha L. Rusche's blog post Soliris"Hi Martha, I would ask if labs are indiacting a wild fluctuation of electrolites, before, during or after treatments...there is also the possibility that pain is coming from a damaged vascular system. That is all I know to tell you"
Svetlana Finley commented on Martha L. Rusche's blog post Soliris"Hi, Martha
Anna is almost 12 not Soliris yet, she used to get muscle cramps and back pains. One doctor told me that might be growing pains or it could be luck of Magnesium and some one told me to give her Tonic water and that helps with the cramps.…"
"Hi Martha, and welcome. It's great to hear that Soliris has been so beneficial for Allison. I was diagnosed with aHUS at the age of 19. I'm 28 now, so a bit removed from the initial episode. Nonetheless, Id be happy to talk to you and/or…"
Sara Palmer commented on Martha L. Rusche's blog post Soliris"Hello Martha
I wonder how aHUS can appear at the Age of 17? My Son Jack developed it Aged 5, I know there must be triggers but surprising it has taken 17 years to appear, do you know what trigger your Daughter had? On the aches and pains side Jadk…"
Heather Still commented on Martha L. Rusche's blog post Soliris"Hi Martha. My son, Ryan, has had aHUS for almost 8 years now - he'll be 11 in April. His most recent complaints are of back pain and leg pain after basketball practice. My brother is the coach, so I asked him if he thinks he may be over doing…"
Donna Kolp commented on Martha L. Rusche's blog post Soliris"Hi Martha,
My son Jonathan is 17, and will start his trial of Soliris next month. He was diagnosed @ 8 1/2 Mos. old. I am curious on how your daughter feels, as compared to before. Jonathan is on dialysis, and while that in itself makes you feel…"
Jodi Kayler commented on Martha L. Rusche's blog post Soliris"Hi Martha, My son Coen, 7, started Soliris in April of 2009. Since he has had aHUS since he was 11mos old, he is fairly good at articulating any side effects or how he feels. He has never complained about cramping or back pain since the start of the…"
Linda Burke commented on Martha L. Rusche's blog post Soliris"Donna Kolp's son Jonathan is Allison's age and will be beginning clinical trials of Soliris next month - very exciting news. (While they're in Texas, I'm not sure of the their trial specifics) I've always been impressed by…"
Phyllis Ann Talbot commented on Martha L. Rusche's blog post Soliris"Hey Martha - glad to see you on here but sorry about Allison's back pain and cramping! Tell Allison Hyde says Hi! Linda - it's actually funny - Dr. Greenbaum is Hyde's long-term nephrologist as well - so he's been watching…"
Melissa Hearn commented on Martha L. Rusche's blog post Soliris"Hi Martha,
We're also in Atlanta and my little boy Bryan is also on Soliris. I knew there was someone else much older who had started Soliris, but not much more. I'm happy that you've found your way to this site. It's a great…"
Linda Burke commented on Martha L. Rusche's blog post Soliris"Whoo hoooo for Allison - that's great news!
You'll note that Dr. Sherwinter also in Atlanta is listed in our Home Page 'Doc to Doc' Registry as one of our gracious physicians willing to share his experiences with Soliris use, so…"
Martha L. Rusche posted a blog postSoliris
Hi everyone,Allison, my 17 year old daughter, was diagnosed with aHUS last July. As all of you know, it's been a roller coaster ride. She responded to plasmapheresis after her first episode and was able to get rid of her vascular cath in October. Unfortunately, Allison had another episode in December. Our doctor at Children's Healthcare of Atlanta, Dr. Larry Greenbaum, and his staff moved mountains to get Allison approved for the Soliris clinical trial. She had a port implanted in January and…See More
Cheryl Biermann left a comment for Martha L. Rusche"Hello Martha, it's good to have you on board. We hope this site proves both helpful and comforting. We look forward to knowing you better."
Martha L. Rusche left a comment for Linda Burke"Thank you so much, Linda. We're at the beginning of all of this. We meet with her doctors today to apply for the Soliris research. I already know this website will be helpful and supportive. Again, thank you."
Martha L. Rusche left a comment for Svetlana Finley"Thank you Svetlana. I think this website will be helpful and supportive! We're at the beginning of all of this, so I'll keep you posted."
Profile Information
- Birthday
- April 11
- 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:
- Factor H (CFH) /Protein (Gene)
Martha L. Rusche's Blog
Soliris
Hi everyone,
Allison, my 17 year old daughter, was diagnosed with aHUS last July. As all of you know, it's been a roller coaster ride. She responded to plasmapheresis after her first episode and was able to get rid of her vascular cath in October. Unfortunately, Allison had another episode in December. Our doctor at Children's Healthcare of Atlanta, Dr. Larry Greenbaum, and his staff moved mountains to get Allison approved for the Soliris clinical trial. She had a port…
Continue Posted on February 15, 2010 at 12:02pm — 10 Comments
Comment Wall (4 comments)
- At 8:13pm on February 18, 2010,
Grace said…
- Hi Martha, and welcome. It's great to hear that Soliris has been so beneficial for Allison. I was diagnosed with aHUS at the age of 19. I'm 28 now, so a bit removed from the initial episode. Nonetheless, Id be happy to talk to you and/or your daughter about my experience.
- At 11:37pm on September 23, 2009, Cheryl Biermann said…
- Hello Martha, it's good to have you on board. We hope this site proves both helpful and comforting. We look forward to knowing you better.
- At 9:50pm on August 24, 2009, Linda Burke said…
- Welcome to the interactive website of the Foundation for Children with Atypical HUS, where we encourage patients, families, friends, and researchers to share information and insights about aHUS. Please explore the website and feel free to participate with questions or comments - we look forward to your additions to the site.
- At 7:05pm on August 24, 2009, Svetlana Finley said…
- Welcome here ;-)
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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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
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...
• • • • • • • • • • • •
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...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak 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 the Foundation for Children with atypical HUS atypicalHUS.50megs.com
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:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
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