ADULTS with aHUS
Are you an adult aHUS patient?
We're inviting adult aHUS patients to submit an article about how a diagnosis of atypical HUS affects family, work, college, and other aspects of daily life. These articles would become part of a new "Adults with aHUS" tab and enlighten others about coping/issues for adult aHUS patients. (Please contact linda@atypicalhus.org with your ideas/topics/questions. Select articles from volunteer authors would be publically posted on www.atypicalhus.org at the discretion of the aHUS webmaster and/or Foundation Board.)
The 'Doc to Doc Directory' for physicians treating pediatric aHUS patients, a resource located in the left-hand column of our Home Page, has met with enthusiatic support as physicians are able to reach out to volunteer doctors experienced in treating aHUS patients. It's been an independent source of valuable information for doctors seeing their first case of this ultra-rare disease, and reaps a huge benefit for pediatric aHUS patients by helping connect resources and thus assist physicians in their quest to improve patient outcomes.
Now's the time to start an adult version of the 'Doc to Doc Directory', a listing of volunteer physicians treating adult aHUS patients. We'd welcome your assistance in creating our adult 'Doc to Doc Directory', and encourage adult aHUS patients to ask their physician to volunteer in this outreach and education aspect for fellow doctors. All specialty areas are needed, including adult nephrology, hematology, transplant specialists, and immunolgy as well as other clinical areas. The participation from the pediatric doctors in their 'Doc to Doc Directory' has been a great asset to other physicians, so let's duplicate that connecting hub for physicians who treat aHUS adult patients! Consider your role to encourage physicians who treat adult aHUS patients and ask them to join this effort, requesting that they volunteer to provide peer support via email or phone consultation with physicians new to adult aHUS diagnosis and treatment. Physicians may email their desire to volunteer with this proposed new adult 'Doc to Doc Directory' by sending their contact info to linda@atypicalhus.org .
Thanks for supporting the efforts of The Foundation for Children with Atypical HUS as www.atypicalhus.org endeavors to promote aHUS awareness, education, and support!
Views: 51
Tags: adults, consult, directory, doctors, physicians
Comment
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Comment by Donna Kolp on February 8, 2013 at 4:24pm -
I just sent a message to you, Linda, regarding the directory and the blog. I am also in the process of updating Jonathan's story, to include the transitioning from pediatric to adult, and his new beginnings with Soliris. I will send this as soon as it is finished.
Donna :)
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...
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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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