The following write up is from the SEPLAA Foundation website from 2011.
The SEPLAA Foundation has embarked on the much needed journey to set up the first Bone Marrow Transplant Centre in Punjab.
The drive for the centre was initiated by the Founder of the SEPLAA Foundation, Mrs. Ammara Farooq Malik and is now also flanked by Dr. Marco Zecca of Hospital San Matteo (Italy), Dr. Omer Chughtai (Chughtai’s Lahore Lab) and Dr. Tahir Shamsi (NIBD, Karachi).
by Mrs. Ammara Farooq Malik, Founder SEPLAA Foundation.
After almost 7 years of fighting my daughter’s disease and 2 transplants, I spent over a year trying to heal and to understand how I could truly make the difference in the lives of people and especially children, who are suffering from blood disorders.
Blood Diseases can fall under the following categories:
1. Genetic blood disorders such as thalassemia, sickle cell disease or enzyme deficiencies such as G6PD, PK Deficiency etc.
2. Blood Cancer or leukaemia.
The saddest part is that most poor and even middle class patients in Pakistan do not even know that there is a permanent cure for thalassemia and that there may be a cure for certain other enzyme deficiencies too. The cure is called a Bone Marrow Transplant (BMT).In November 2009, I wrote my first article on compulsory blood screening in Pakistan to help avoid thalassemia cases from surfacing (http://www.jang.com.pk/thenews/nov2009-weekly/nos-22-11-2009/dia.htm#4).
But the problem still remained that though the idea made sense in several other countries , including Muslim countries, where it is accepted practice that there must be ‘compulsory premarital blood screening to avoid thalassemia’, the idea in Pakistan is unfortunately facing tough resistance from critics who see only it’s practical down side in a Pakistan which is surviving in one of the toughest periods of it’s existence.I have not given up hope in that area altogether…I hope that the Punjab Government makes the relevant laws to implement this much needed step soon.
In the meanwhile, what about those over 150,000 people in Pakistan who are Thalassemia major and who can possibly live a normal healthy life, if they do not have major complications and can undergo a transplant?
When my daughter was sick, our options were very limited as far as permanent treatment was concerned. There was NO bone marrow transplant facility in Lahore and no reliable one anywhere else in Pakistan either. We therefore opted to take her to Italy for her transplant.The story does not end here. The Post BMT care is essential for the road to recovery. Without doctors who can understand the nature of problems a BMT patient can face, there can be a risk of poor medical care leading to an aggravation of conditions faced due to GVHD (Graft versus host disease),contraction of several life threatening diseases/ viruses such as Swine Flu, Parvo Virus or CMV (particularly fatal for immuno compromised patients) or even a bone marrow failure altogether.
In my daughter’s case, her bone marrow failed completely after 1 and a half year of her first transplant because there were no post BMT care specialists in the best hospitals we visited in Karachi and Lahore in March 2009.
After I came back from Italy in August 2009, I immediately started researching about the facilities, laws and options available for patients of blood disorders. I had to learn a lot since I had been cut off from the world since the past 6 months, I was a law professor and a mother…who had been wrecked twice.
It took me a year since that time to be able to talk about what my family had gone through without ending up becoming emotionally distraught. And I was more than determined to do something about it…I was utterly passionate about wanting to do something to help the patients in Lahore and beyond.
In April, 2010, I took my daughter back to Italy for her follow up visit. In a split second moment of inspiration, I wondered if I could interview the newly appointed Director of the BMT facility for the soon to be launched SEPLAA newsletter. To my utter joy, he agreed! (See interview: http://www.seplaafoundation.org/index.php/projects/health/bone-marrow-transplants-in-lahore/bone-marrow-transplant-information-services/) And the best part about the 2 hour long detailed interview was that half way through the interview, the interview became almost a collaboration meeting between Hospital San Matteo and SEPLAA Foundation in which we suggested a number of mutually useful steps for both Pakistani patients , doctors as well as the Italian hospital.
Encouraged by this solid collaboration offer, I met with a number of heads of hospitals and experts over the year in Lahore but realized that unless the stake holder remains active, no facility can survive. I was particularly interested in having a BMT facility for genetic blood disorder, aplastic anemia or enzyme deficiency cases as my daughter had been a PK deficiency patient. Yet this was not on the agenda of most hospitals.
During this year, I received emails from a number of bone marrow transplant patients and their family members who needed guidance in choosing hospitals, treatment options or even moral support…it was impossible for me to forget what my daughter had gone though and to move on without trying to help anyone I could who was in the same predicament.
Children who are born with the condition of requiring blood transfusions every 3-5 weeks need to have as much an opportunity to be able to have a normal healthy life as anyone else…especially when the average life expectancy after such a miserable life that they lead is only about 12-16 years.It was with this in mind, that I finally decided that the SEPLAA Foundation would create it’s own Bone Marrow Transplant Facility in Lahore in collaboration with technical partners.
In February, 2011, after a year’s wait, I finally met a group which was both open minded as well as excited about starting this much needed facility for the Blood Disorder patients of Lahore: The Chughtai’s Lahore Lab ( http://www.cll.edu.pk/) under the guidance of Dr. A.S. Chughtai and Dr. Omer Chughtai. The Chughtai’s Lahore Lab has been providing quality services since the past 27 years making it one of the most well respected and growing network of laboratories in Pakistan.
Under the collaboration, the Chughtai’s Lahore Lab will facilitate the SEPLAA Foundation’s vision to support a marrow donor registry in Lahore and also conduct all relevant tests for BMT procedures. We were also able to get the support of BMT experts in Karachi to facilitate the BMT procedures in the near future SEPLAA BMT Centre in Lahore.
More good news for the SEPLAA Bone Marrow Transplant Centre is that the Hospital San Matteo has agreed to formally collaborate with the SEPLAA Foundation to help set up a BMT centre in Lahore for poor and deserving patients.
The Hospital San Matteo is one of the best bone marrow transplant centres in Europe, represents one of the most active and experienced Institutions in the field of HSCT world-wide and has performed over 1000 successful transplants. In the present collaboration, the hospital is being represented by Dr. Marco Zecca, who is the Director of the Bone Marrow Transplant Facility there and is also a Member of the European Bone Marrow Transplant Group.
Dr. Tahir Shamsi, the pioneer in BMT procedures in Pakistan has also joined our collaborative effort to help set up the SEPLAA Bone Marrow Transplant Centre, the first one for patients of blood disorders in not only Lahore but also Punjab. Dr. Shamsi performs approximately 35 transplants a year in Karachi (http://nibd.edu.pk/) and can help extensively with not only the setting up of the facility but also with the training of the medical staff in Lahore.Dr. Shamsi has also recently started a Pakistan Marrow Donor Registry to get donors registered in Pakistan who can be called as donors within Pakistan for transplants to be conducted in Pakistan.
Please join the Pakistan Marrow Donor Registry and help deserving patients in Pakistan!:http://www.pmdr.org/
The first steps for the first Bone Marrow Transplant Centre for Genetic Blood Disorders in Lahore, have now been taken.
More news about this very exciting development for thalassemia patients and their families will be announced soon…meanwhile I am working hard to make it happen and need your prayers.
For feedback, suggestions or questions please write to the Founder at email@example.com.
BY AMMARA FAROOQIPosted 14th February 2011