MESSEGES

Madam Faryal Talpur Sahiba
Patron-in-Chief, TPWS

The past two years have been among the most dispiriting chapters in the history of world. Covid19 brought world to a shock and standstill.However, the continuous efforts have been leading the human race to promising results. Never theless, the fight against COVID-19 may take a few more years to reach a concluding result. Like the horrors of COVID-19

, Thalassemia is also a dangerous disease, which leaves the patient and his/her family in a state of hopelessness. Nevertheless, the Thalassemia Patients Welfare Society (TPWS) is a beacon of hope for such patients and families. I can proudly proclaim that ThalassemiaPatientsWelfare Society(TPWS) has been doing its best to fight against Thalassemiadisorder.Fabulous building, well equipped laboratory, trust worthy blood bank, efficient and skilled staff, effective services, efficient management all deserve due appreciation. Good quantum of development work in charity welfare organization was possible due to the endeavor of its management, executive committee and sympathized humanitarians since 2006. Thalassemia is a generic disorder of the hemoglobin chain transferred from parents to their offspring since birth. An estimated 6,000 to 8,000 Thalassemia Major children are born in Pakistan every year. The estimated carrier rate is 5-7%, with 9.8 million carriers in the total population. They do not need blood transfusions themselves but a marriage of two such persons, may give birth to a child with Thalassemia Major, and who requires regular blood transfusion for the rest of their life. As a rough estimate, at any given time, more than 150,000 Thalassemia Major children may be found in our country, getting incomplete treatment with infrequent blood transfusions and inadequate iron chelation therapy. I must appreciate the efforts made by the whole team of TPWS, who arranged thisforum to aware the general public aboutThalassemia and how to prevent people and save the children for coming generations.

Dr. Azra Fazal Pechuho
Minister Health Govt of Sindh

However many great things have happened in the world, almighty Allah chosen me to serve thmankind especially for the people of Sindh. Health Department, Government of Sindh hasbeen one of the finest providers of health care in the country as it has well established network of tertiary, secondary and primary health care facilities delivering quality health care not only tothe Province of Sindh, but catering patients from all over Pakistan

Every society buildup on the basis of healthy mother. Keeping the track I always think over about primary health care for mother and child as it is the basic building block of the any healthier society. In this regard we have achieved many milestones specially we have empowered and equipped the MCHs center at grass root level at the door steps of the farmers, villagers poor families to give them treatment without any cost. The sindh department of health currently has more than 9381 doctors 2,705 nurses, over 24,000 paramedics and over 21,000 LHWS, LHSS are serving all over the province. The province has four medical universities and four medical colleges, 19 nursing school, 10 midwifery schools and 5 public health school for lady health visitors. The huge network of hospitals and health facilities include 08 teaching hospitals, 20 specialized institutions for chest, dermatological and mental illness, 16 district headquarters hospitals, 27 major hospitals located in the major cities, 50 taluka hospitals, 147 rural health centers in small towns, 772 basic health units in union councils, 1499 dispensaries in larger union councils, 107 mch centers and 29 maternity homes. The rural health centers provide specialist care in the morning hours in addition to minor emergency services and have indoor facilities that are seldom utilized, while the BHUS and dispensaries provide outdoor medication and preventive care as well. As far as the Thalassaemia Patients Welfare Society is concerned, we have always keep in priority to increase the budget and instruct to Sindh Blood Transfusion Authority to keep track the data collection and shared with Health Department Govt of Sindh. I must appreciate the management of TPWS, but there is always room for improvement. Keep trying and emphasize on prevention of Thalassaemia disease. Being a Minister Health, I am proud to serve for human being and perform vital role for betterment of people. Me and my team wish that Thalassaemia Free Sindh & Pakistan. The only way to combat this disease is prevention because there is big communication gap between the general public and lack of knowledge that how to prevent from spreading this disease. So, we collaboratively promise to put all our efforts for screen all individuals living in Sindh and this will be our top priority. I have already approved and released the maximum budgets for all Thalassaemia Centers as they requested. I assured that, my support always with these thalassemia center across the Sindh in all aspects either administrative or financial when needed, InshaAllah. We always own all the health welfare societies of Sindh, specially TPW Society, where a large number of patients are registered and people of SBA getting international standard services from the center. On the other hand we directed the SBTA,

Mr. Sheharyar Gul Memon
Deputy Commissioner,TPWS

invited to visit Thalassaemia Patiets Welfare Society Nawabshah. It was astonished to view the number of innocent children were getting blood transfusion using a heavy needle across their sensitive skin and pinched through sensitive veins. A painful view of regret and grief laying in their eyes for hours, to accomplish the procedure of transfusion and their eyes were remain in waiting for when will be the exit that needle.

That would very excruciating for me, in that moment I undertookmyself, that I will be place my utmost efforts to subdued over Thalassaemia Disease and immaculate at least district Nawabshah from this disease and over all Shaheed benazirabad as well.I always encourage the institutions and welfare organization who are working in parallel with state to serve the betterment of human being regardless the religion, sect, colour, caste and minimize the work burden with shoulder to shoulder with state.I must acknowledge the efforts made by TPWSociety thatworking for only sake of general public. Being an administrative custodian of district Nawabshah, it is my core responsibility to assist, support and encourage TPWSociety. It is pertinent to mentioned here the dedication of Dr. Muhammad Sadiq Siyal and his team who have always been served to mankind with enthusiasm and trying their level best specially for SBA division and Sindh province as well. With drawing the attention of TPWS management towards prevention of this Thalassaemia Disease, I assigned the task to TPWS team to reach targeted population at grass root level and screen the pockets of different UCs i.e villages where the cases of Thalassameia major reported frequently.Pre-merital screening is utmost important to prevent and combat against Thalassaemia Disease. I am very glad to state that the team of TPWS has finalized the some of the thick targeted population and got screened the marked pockets. But there is very broad room to work over in the area of prevention of Thalassaemia disease. InshaAllah, with graced blessing of almighty Allah we will be succeeded.(Aameen)

Prof,Dr. Ali Bux Soomro
Chairman, TPWS

Beinga donor,the transparent, neat and clean environment asserted me to join the team of Executive Committee, which assumed the responsibility to move the Thalassemia Patients Welfare Society a head. The vision, and thedetermination that encounters Thalassemia in Sindh made me inspiredand embolden me to play my role in its development activities

. Thalassemia does not affectonly a child, but a family and in the broad spectrum it impinge the human resource, national economy and commence the social tribulations and adversity. From this platform, I invite social workers, teachers, lady health visitors/workers and all the civil societyto motivate masses for adaption of preventive measures to fight against Thalassemia. I must endorse here, the services of social, electronic, and paper media team that played a vital role to make cognizantthe general public, I hopetheseteamswill continue their support to combat against Thalassemiaand to uplift our welfare society to prevent the nation from this deadly disease. I appreciate the Chief Patron, executive committee, office bearers and the management of TPWS to enable us to build a progressive welfare society. Through their help and support, the TPWS has achieved marvelous targets in serving the needy by providing them with enhanced medical facilities. As the TPWS’s building is now extending, I look forward to the TPWS team putting more effort into expanding facilities by enhancing the laboratory, organizing blood donating campaigns, enhance blood bankcapacity, and arranging transport and free of cost food for the poor being consulted treated at the TPWS. I am assured that TPWS shall flourish more under the patronage ofMadam FaryalTalpurSahiba, executive committee, donors, and supporters. “Strong people stand up for themselves, butthe stronger stand up for others”

Dr. Muhammad Sadiq Siyal

Secretary, TPWS

I still rememberthose days in 1986, when I was posted at Children Ward Civil Hospital Nawabshah (PMCH). At that time attendants/parents of the children brought theirThalassaemia children/patients from outreached and far flung areas for blood, blood bags and medication,even those could not afford even the food to eat.

I owned all such blessings (Alhumd-o-li-Allah), so, I started the help in the shape of donation like freefood, medicine, and farefor transportation to relief the children. At that time I conceived an imagination from my soul and inner core of my heart that “May thechildren, those are suffering from this deadly disease named Thalassaemia shall get the cure with gratificationand provided them air-conditioned ambiance with all such facilities those provided in charity hospitals”.At that place there would be blood transfusion, iron chelation, medication, food and transportation provided them free of cost. Furthermore, we may delivered the awarenessprograms for general public to prevent this genetically transferrable deadly disease from parent to child. I am grateful to Chief Patron Madam FaryalTalpurSahibawho offered me this challenging responsibility,voluntarily,in 2006 and my dream came true and I was able toprovide all such facilities free of cost with the help of silent donors.Hence,I appreciate the role she played and stands with TPWS teamin every contretempsand hardshiponTPWS.Subsequently I must appreciate the team including the Chairman, all executive committee members, office bearers, donors, and social, electronic and paper media. I appeal to civil society and all who reading this text, please put your share in the shape of make aware the people about how to prevent thalassaemia disease, blood donation, khairat, sadkat, fitra and zakat. “Kindness is thelanguage which the deaf can hear and the blind can see

BACKGROUD

While visiting various localities, villages and areas of the district, it was brought into the notice of Mohtarma Faryal Talpur Zila Nazim Nawabshah, that a great number of children are suffering from Thalassaemia in the district and there is no proper facility in the entire district for their blood transfusions and treatment. The patients were compelled to go to Karachi for the treatment and transfusion, which was unaffordable for the poor families.

Many applications were being submitted to the Zila Nazim for the financial assistance by the patients and their family / parents. Madam FaryalTalpur took serious notice of this issue and discussed the matter with the Social Activist, Doctors and Workers of Nawabshah. Ateam was formed to personally visit the transfusioncenters working at Badin and Karachi for Thalassaemia 2)patients. Theteam of Hussani Blood Bank Karachi promised to provide technical support for establishing such type of service at Nawabshah. Taking in view the example of Thalassaemia Patient Welfare Society Nawabshah, a CCB was formed, to establish a ThalassaemiaPatientsTreatmentCenter in Nawabshah. A donor conference was arranged on 20th Nov 2006 with the collaboration of ZilaNazimNawabshah. The conference remained a successful venture and an amount of Rs: 1,000,000/= (Ten Lacs only) was collected from the donor conference. The conference was attended by a galaxy of Philanthropists, luminaries and prominent personalities of the district, province and country. The project proposal was prepared on CCBForm-4 amounting to Rs: 5,000,000/= and was duly submitted to EDO Community Development Nawabshah for further process to materialize the cherished noble dream of providing free of cost service delivery / facility at the local level to the Thalassaemia Patients of Nawabshah and adjacent districts.

MISSION:

To take all out efforts for prevention and cure of Thalassaemics, major and minor

VISION:

A healthy and Thalassaemia free society

OBJECTIVE:

To provide the best care and treatment for patients with Thalassaemia.
To raise public awareness on health related problems and disease with specific target on Thalassaemia.
Collection and compilation of data on Thalassaemia patients at Nawabshah and other districts of Sindh.
Establishment of Resource Centre for blood related diseases. Preventive and curative programs for parental diagnosis.

Potential:

Every welfare society efficiently and effectively performs its functionality andoptimum level of operations on the basis of two major factors. (1)Human resource (2) FinancialStrength. Fortunately,TPW society having enthusiastic human resource who are professionally sound and robust. However, the financial potential still does not meet the requirements and deficit faced by organization compared with financial strength. Human Resource of TPW society may put their strength and efforts efficiently, if their motivation and career growth be developed with a pace of time. This can only be possible if the societymaystrong enough in financial position as compare to present state.

Performance & Target:

Envision the performance during the year 2023-24, we have delievered the quality services in the following areas:

1)O.P.D (Outdoor Patients Department):The

The medic & paramedic staff put their utmost efforts that indulge innocent Thalassaemia patients and their parents in routine. Approximately one hundred fifty patients checked-up on daily basis. If we sum-up the figure yearly approximately ____________patients checked-up in 2023-24.

2- Blood Transfusions:

After getting vitals at OPD section, patients recommended for blood transfusion according to their deficient hemoglobin requirement. Ninety to one hundred blood plus blood transfusion need blood transfusion. All blood screened over again of each sample, firstly on rapid kit at the time of collection then screened, on Electrochemiluminescence Immunoassay (ECLIA)machine before transfusion as per WHO standards.

3- Sources of Blood & Blood Donation CampsOrganization:

TPWSociety having team consists on 1 x Manager Blood Donation Camp and 5 x medic staff always ready to move to field for arrangement of blood through blood donation camps. Except Ramzan Kareem, this team organizes the camps 24/7 throughout the year from all over the Sindh. During the year 2023-24 approximately __________ received blood through blood donation camps.

4- Prevention From Spreading Thalassaemia Major in Targeted Population:

(a) Public Awareness:

There are more than ________ camps were arranged to aware general public about Thalassaemia in 2023-24. Colleges, universities villages and different public forums were visited for aware the consequencesof Thalassemia disease and and how to prevent spread of such disease.

(b) Sampling and HB Electrophoresis TEST:

Some of the pockets of different areas of SBA division where frequent cases have been reported, which are affected from Thalassemia Major Disease. Therefore, it was planned that each of the individual resident of that village/pocket get tested through HB electrophoresis for diagnosing that either that individual is Thalassamia Minor or normal. After screening all males/females have been informed that those, who observed as Thalassamia Minor should not get married with Thalassamia Mninor Females and vise- versa.

(c) CVS Procedure:

It is very fortunate that some of the medic of TPW society have obtained the training on CVS procedure from well-known Institute of Blood Disease. Approximately one hundred fifty procedures have been finalized in last quarter and same,forwarded to Karachi for further diagnosis.

Targets:

Pre-marital screening is primary goal of TPW Society to minimize the spread of Thalassaemia.
No, such case of CVS test (Molecular Lab) will be forwarded to Karachi and same will performed at TPWS SBA in near furture.
TPW society will work as “National Institute of Blood Disease” and perform the Bone marrow transplantation at TPW society.
Termination of pregnancy procedure will be carried out at TPW society of those patients who have been diagnosed Thalassaemia Major in the fetus of pregnant married women.

Challenges:

Maximize the efforts for screening of all affected pockets of targeted population through HB electrophoresis screening of individuals at their door steps at utmost level and priority to prevent the marriages between Thalassamia minors.
Thallassaemia Minor married females of different rural families are facing social stigma problem and family disputes in the name of religious tagging and social barriers.
Implementation of Law passed Sindh Govt, that, It is necessary to show certificate of clearance of Thalassaemia Minors disease before getting married. In breach of that order Nikkah Khuwan may be penalized accordingly.

Support:

We are very thankful to Sindh Govt Health Department, specially Minister Health, Honourable Dr. Azra Fazal Pechuho, who put her accelerated efforts and increased the budget for the TPW society. We are facing deficit still as the cost of medicines and consumable items i.e chemical for 4^th generation diagnostic machines (Electrochemiluminescence Immunoassay – ECLIA) recommended by WHO standards.

Secondly, we must enlighten and acknowledge with thanks to Zakat & Ushr Department Ministry of Auqaf Sindh, and they also support and fixed the budget for TPW society. We appeal to Zakat & Ushr Department Ministry of Auqaf, they increase the budget and performing supportive role to serve the mankind through this TPW society

In addition, we regard the philanthropists and civil society who donate grant their sadqat, zakat in the shape of donation help to this TPW society. Furthermore, SBTA perform regular visit to check the standard of the TPW society and support to train the staff of TPW society.Moreover, It is pertinent to mentioned here the vital role to perform by local administration of District Nawabshah, specially Deputy Commissioner Nawabshah always in support to TPW society whenever needed.