The Atypical HUS Foundation

Rishab Bose
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  • Bhubaneswar, ODISHA
  • India
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Rishab Bose's Page

Latest Activity

Rishab Bose left a comment for Kim Donan
"Kim, Do not worry. You will be alright. My nephew age 8yers is detected with aHUS. He had gone for many times plasmapherosis and Dialysis. Now he is doing well. You can share experience in mail ID aurobindabose@yahoo.com. Thank You"
Jan 14, 2016
Linda Burke left a comment for Rishab Bose
"Hi there, With such a rare disease as this, few resources are available on a large scale.  Given the expense of treatment, financial support sadly falls on patients, families, and insurance options within each nation.   While The Atypical…"
Oct 18, 2015
Rishab Bose left a comment for Linda Burke
"Thank you Linda . Yes we are in touch with Mr. kamal shah .Here,aHUS foundation INDIA expressed their inability for financial help. Also, I wanted to ask if needed can we send our sons reports to the panel of doctors for their…"
Oct 17, 2015
Linda Burke left a comment for Rishab Bose
"I am so sorry to hear that your son is having such a difficult time.  Have you connected yet with Atypical HUS India?  Its founder Kamal Shah is online here."
Sep 30, 2015
Rishab Bose is now a member of The Atypical HUS Foundation
Sep 30, 2015

Profile Information

Birthday
November 16
Do you have a friend or family member diagnosed with aHUS?
Immediate Family
I am a caregiver for an aHUS patient
Yes: for a pediatric aHUS patient
I am an adult aHUS patient.
No
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My membership request involves business interests as I seek additional aHUS information for business applications.
at present under plasma pherosis
My child ( or myself as a patient) is best described as:
Not Tested

Comment Wall (2 comments)

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Join The Atypical HUS Foundation

At 7:24pm on October 18, 2015, Linda Burke said…

Hi there,

With such a rare disease as this, few resources are available on a large scale.  Given the expense of treatment, financial support sadly falls on patients, families, and insurance options within each nation.   While The Atypical HUS Foundation has a medical board which review content to ensure accuracy, they do not provide medical information to patients as part of their volunteer position.  The Doc to Doc Directory has a list of physicians that other physicians can contact for medical advice and consultation, so that may be helpful for your child's doctors to contact with their questions.  Kamal can inform you of another other options that are specific to Indian aHUS patients, but we all are face similar situations as patient or caregivers - it is difficult for us all when the disease diagnosis is so rare.

At 11:53pm on September 30, 2015, Linda Burke said…

I am so sorry to hear that your son is having such a difficult time.  Have you connected yet with Atypical HUS India?  Its founder Kamal Shah is online here.

 
 
 

IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

WELCOME - JOIN US!

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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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 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...

Help us fight the battle

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.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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