Sunday, 6 October 2013

بسم الله الرحمن الرحيم

In the name of Allah, the Most Gracious, the Most Merciful

لسَّلاَمُ عَلَيْكُمْ وَرَحْمَةُ اللهِ وَبَرَكَاتُهُl
“May the Peace, Mercy, and Blessings of Allah be with you

Maryam's Physician, Dr. Fabio Benedetti said In the last 3-4 weeks the Maryam disease has changed. At present the prevalent problem is the PNH, that is causing an important hemolysis.
The last Bone Marrow aspiratte in fact is no longer consistent with an Aplastic Anemia: it's very rich of cells, with an expanded erythroid population.
The last week count is: Hb 10,9 g/dl, WBC 5480, with 1589 neutrophils, Platelets 40.000/mmc. I
We have tried a therapy with low dose of steroids in order to limit hemolysis.
According to him, Our daughter is now doing well.
In few days we'll know if the steroids therapy will be effective.


Maryam's Physician in Pakistan Dr. Tahir Shamsi responsed regarding my changed syndrome:
"My advise is to consider Haplo-identical parental donor transplant in this situation, haplo identical means half matched. mom or dad or any sibling". 


Maryam's Online Supportive Care Physician Dr. Lawrence B. Faulkner from cure2children responsed regarding my changed syndrome:
"It is not realisitc to do an unrelated donor search in Pakistan since there is no registry, same thing for India which shares similar ethnic background. I assume all first-degree family members have been HLA typed. If there is consanguinity, which is quite frequent in Pakistani families, there might be a 5-10% chance than a cousin or uncle/aunt might be compatible. From the blood count reported Maryam does not seem at present to have severe aplastic anemia and BMT may not be necessarily indicated, if so, I agree with Dr Shamsi, partially matched family donors might be the only realistic option even though I am not aware of reports spefically addressing haplo BMT for severe aplastic anemia in the new era of cyclophosphamide post-BMT (a personal communication by Dr Andrea Bacigalupo, a prime aplastic anemia adult BMT expert, was not very encouraging)."