Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > AA
Register FAQ Search Today's Posts Mark Forums Read

AA Aplastic anemia

Reply
 
Thread Tools Search this Thread
  #1  
Old Mon Jun 24, 2013, 03:17 AM
sajid sajid is offline
Member
 
Join Date: Jun 2013
Location: Rawalpindi, Pakistan
Posts: 1
VSAA - Daughter

My Daughter Mishaal Khan aged 4 is suffering from Ver Severe Aplastic Anemia (VSAA). She was diagnosed with bone marrow stem cell suppression problem few days ago. Bone marrow can be transplanted in Pakistan but unfortunately, her HLA has not matched with any of my family members (Me, My Wife and Son). We are still looking for any close relative with HLA resemblance. Currently Daughter is taking immune suppression medicines (Cyclosporine (Sandimmune®, Neoral®).Her HLA Class I Serology is A1,A3,B52(5),B27,Bw4,Bw6.
Has anybody same HLA Typing. Please Help
Reply With Quote
  #2  
Old Mon Jun 24, 2013, 02:04 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Sajid,

I'm sorry to hear about your daughter's aplastic anemia.

You could try contacting the National Institute of Blood Diseases, the Aga Khan University Hospital, and the Pakistan Institute of Medical Sciences to ask for advice. I suggest that you ask who can search the international registries to see if there is a match for your daughter in the registry of any country, not just in Pakistan.

Pakistan desperately needs a national bone marrow registry and for people to join it. In 2011 there was a "Pakistan Marrow Donor Registry" website at pmdr.org but the website is no longer there, perhaps due to a loss of funding. Here is a snapshot of what the site looked like in 2011.

I've read that when there is no better choice many doctors in Pakistan give their patients a "haplo" transplant, where a half-matched parent (usually the mother) is the donor.

If you know your daughter's DR type (not just A and B) then you can check for a potential match in the U.S. bone marrow registry using MatchView.
Reply With Quote
  #3  
Old Tue Jun 25, 2013, 12:47 AM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 766
Sajid,

Is ATG in combination with Cyclosporine available in Pakistan? When a AA patient does not have a matched related donor, this is typically the next treatment tried. Young patients usually have a favorable response to ATG if the AA was caused by an immune response.
__________________
55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
My daughter will be a donor jordan'smom Transplants 3 Thu May 26, 2016 12:32 PM
daughter 15 just got diagnosed with AA angela F Canada 2 Sun Jul 19, 2015 01:28 PM
16 year old daughter with PNH and AA RosP Tell Your Story 2 Sat Oct 26, 2013 08:40 AM
My daughter has MDS mom2c2008 Tell Your Story 1 Wed Jun 25, 2008 09:31 PM
6 year old daughter skoopman Pediatrics 2 Tue Aug 7, 2007 01:14 PM


All times are GMT -4. The time now is 04:46 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org