VSAA - Daughter

[sajid]

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

[Neil Cuadra]

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.

[Hopeful]

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.