The Atypical HUS Foundation

 

http://sidharthsethi.blogspot.com/2016/04/eculizumab-for-ahus-first...

This article was written about our son, Jacob. We were living in India at the time of his first episode with aHUS. This article was written to bring awareness to the need for eculizumab in all countries. Jacob was able to receive the needed drug after 4 weeks of jumping through many hoops and diplomatic red tape. It was hard to sit in a hospital with two other parents who had children suffering from the same illness knowing my child could get the treatment all because he was a US citizen.

The article notes that Jacob had genetic testing that came back normal. Recently we had new testing done through Machaeon and just received the results last week. That testing did find a genetic link to aHUS.

Views: 178

Reply to This

Replies to This Discussion

Hi Samantha I met Jacob's grandparents in Iowa back in. 2014 . It is good to know about his recovery because I know how difficult your situation was. But I believe BUPA was of help. Great to see you are championing access for eculizumab in places like India as not all with aHUS can benefit from complement inhibitors . Hope you have completed the aHUS Global Survey as a carer from India your experience would be so helpful.
Samantha your blog ties in with two other discussions right now involving Kamal who is from India and leads patient organisation aHUS India

My parents went to Iowa in 2014 to gather information on our behalf. They spoke highly of all the wonderful people they met and all the information they learned for us. Yes BUPA was our insurance provider while we were in India. It took a month or so for them to approve the Soliris. Then it was a matter of working through the many diplomatic hoops to secure the drug and figure a way to ship it to India. Alexion helped with that portion along with a gentleman in India who helps with these sorts of situations.


 
Len Woodward said:

Hi Samantha I met Jacob's grandparents in Iowa back in. 2014 . It is good to know about his recovery because I know how difficult your situation was. But I believe BUPA was of help. Great to see you are championing access for eculizumab in places like India as not all with aHUS can benefit from complement inhibitors . Hope you have completed the aHUS Global Survey as a carer from India your experience would be so helpful.

When I first joined this board I was put in contact with Kamal. I have not met him personally, but know his story. He works closely with Dr. Sethi with his organization.


 
Len Woodward said:

Samantha your blog ties in with two other discussions right now involving Kamal who is from India and leads patient organisation aHUS India
It was good to meet them too with such a surprising story which I have not forgot. I have said this before but it is a wonderful experience when aHUS folk meet up and everyone should take advantage of a regional meeting provided by the Foundation and keep the momentum going.

Helping people in India would be an opportunity for aHUS people in the west give something back having experience such good fortune maybe encouraging your overseas development state department to reimburse companies like Alexion to give controlled compassionate access to individuals like Kamal, who is approaching two decades of living with dialysis after his first encounter with aHUS . His was triggered by a vaccination prior to attending University in the USA

Kamal has put something back by creating the largest service provider for dialysis facilities for kidney patients whose chronic kidney diseases would otherwise be a death sentence.

The same lack of complement inhibitors exists in place like South Africa too.
You can see Kamal in this video of alliance speakers in London. https://youtu.be/LkbFLrYwx2U

Reply to Discussion

RSS

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.

************************

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

Badge

Loading…

© 2017   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service