-
Martin Martinović
- Male
- Slavonski Brod
- Croatia
- Blog Posts
- Discussions
- Events
- Photos
- Photo Albums
- Videos
Martin Martinović's Page
Latest Activity
"Dear Cheryl,
thank you for the welcome and I hope that our friendship will be for the mutual benefit.
Best Regards"
Cheryl Biermann left a comment for Martin Martinović"Dear Martin,
Your welcome. Yes, we are family because of this disease and we pray for one another and when some one has an accomplishment they never could have achieved before this new treatment we all rejoice, just as we feel a great…"
"Thank you! I visit the web site you recomended me, it is also interesting. I am glad that I can communicate and share expirience and problems to you and others peoples, it is much more easier to live with it. I will continue to communicate with you…"
"Thank you very much for your welcome!
I visit the web site you recomended me, it is also interesting. I am glad to meet and communicate with people with similar problems and that somebody can understand my problems. At this moment, my son…"
Cheryl Biermann left a comment for Martin Martinović"Welcome! If you do go to the other web site, perhaps they will be able to add your native language, it too is a wonderful site and will enable you to see what is happening around the world as far as treatment and knowledge. Feel free to…"
Linda Burke left a comment for Martin Martinović"Welcome to the website - I was sorry to hear about your little boys but am glad there is Soliris availability in Croatia. Since English is a not your 1st language, know that we are in partnership with NORD and Eurordis at…"
Profile Information
- Birthday
- November 3
- 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?
- Yes
- My membership request involves business interests as I seek additional aHUS information for business applications.
- OK
- My child ( or myself as a patient) is best described as:
- Tested but Awaiting Results
Comment Wall (3 comments)
- At 10:49am on January 12, 2012, Cheryl Biermann said…
Dear Martin,
Your welcome. Yes, we are family because of this disease and we pray for one another and when some one has an accomplishment they never could have achieved before this new treatment we all rejoice, just as we feel a great gratitude when the newly diagnosed patient gets the proper treatment soon enough that they have little if no lingering effects!
I think you have done wonderfully as far as your grammar, I feel we are so fortunate to have the computer translation programs now!
Blessings to you and your family, and if you want to add anything to either of the web sites, please feel free.
Cheryl Biermann
- At 9:55am on January 11, 2012, Cheryl Biermann said…
Welcome! If you do go to the other web site, perhaps they will be able to add your native language, it too is a wonderful site and will enable you to see what is happening around the world as far as treatment and knowledge. Feel free to join in any conversations or begin new topics here as well.
- At 10:26am on January 10, 2012, Linda Burke said…
Welcome to the website - I was sorry to hear about your little boys but am glad there is Soliris availability in Croatia. Since English is a not your 1st language, know that we are in partnership with NORD and Eurordis at www.rarediseasecommunities.org - there are 5 different languages and you can connect with us via that site as well....many of us discuss aHUS issues via both websites.
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.
************************
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.
Badge
© 2012 Created by ALPHA MARKETING.
Powered by 
.
