AIMS AND OBJECTIVE
Background
Every year around 8000 to 9000 major Thalassaemia cases are reported across the country while, after every two-hour a new-born with major Thalassaemia is reported world wide. In Pakistan 90,000 to 100,000 children are reportedly carriers of the disease.
Due to lack of facilities in public sector health centers the situation is grim in Pakistan with passage of each single day.
Due to lack of facilities in public sector health centers the situation is grim in Pakistan with passage of each single day.
Although some social societies and philanthropists are engaged in fighting against th.JPG)
e disease but due to scarcity of resources they are facing tremendous difficulties in meeting out the required facilities. The Frontier province is the worse hit area of the blood diseases but lack of facilities in government run institutions complicated the situation. Frontier Foundation Welfare Hospital and Blood Transfusion Center, which was established on 30th March 2004 and also have a branch in Kohat is providing services to the patients of fatal disease on 100% charitable basis even food is also provided to the patient and attendant with out any charges. Presently, the foundation is providing blood to more than 1422- registered and unregistered patients of the deadly diseases of Thalassaemia and Hemophilia, majority of patients are destitute and poor and facing numerous difficulties. It is worth mentioning that during the blood screening 272 cases of hepatitis and 4 cases of HIV/AIDS were also reported. Generous contribution of charity donors, individuals is the sole resource of the foundation but financial crunch of the foundation was the main hindrance for extending facilities to the poor and destitute segments of the society.
e disease but due to scarcity of resources they are facing tremendous difficulties in meeting out the required facilities. The Frontier province is the worse hit area of the blood diseases but lack of facilities in government run institutions complicated the situation. Frontier Foundation Welfare Hospital and Blood Transfusion Center, which was established on 30th March 2004 and also have a branch in Kohat is providing services to the patients of fatal disease on 100% charitable basis even food is also provided to the patient and attendant with out any charges. Presently, the foundation is providing blood to more than 1422- registered and unregistered patients of the deadly diseases of Thalassaemia and Hemophilia, majority of patients are destitute and poor and facing numerous difficulties. It is worth mentioning that during the blood screening 272 cases of hepatitis and 4 cases of HIV/AIDS were also reported. Generous contribution of charity donors, individuals is the sole resource of the foundation but financial crunch of the foundation was the main hindrance for extending facilities to the poor and destitute segments of the society.
DR. YASIN ZIA CHINA MEDICARE WELFARE HEALTH CENTER ( ORG )
The ORG are also providing free of cost screened blood to the patients of government run hospital in emergency cases on the request of concern doctors and other needy people.
It has also launched a comprehensive campaign for awareness among the general masses and arranging seminars, rallies and walks in this regard across the province. Social societies are engaged in struggle against these killing diseases. Media campaign against the deadly disease can also contribute to the efforts of social societies and the government must extend fiscal support for this purpose.
Provincial government has the capacity assistance these institutions how are providing services to the vulnerable community. The diseases have its roots in FATA, Northern districts of CMWHC and the rural areas of Balochistan, Sindh and some parts of Punjab as traditional values still existing. The provincial government has also promised for establishment of committee to coordinate with the social societies engaged in struggle against various diseases but so for the committee has not initiated its effort. The reality is that majority of social 
societies are engaged on self-help basis and providing blood and other facilities to the needy and helpless victim of the illness round the clock. It is also responsibility of general masses to adopt precautionary measures before entering into matrimonial relation and chose their life partner after consulting health expertise and conduct HB electrophoresis tests, as the diseases are not curable but preventable and we can only save our offspring by adopting the preventive associations.
societies are engaged on self-help basis and providing blood and other facilities to the needy and helpless victim of the illness round the clock. It is also responsibility of general masses to adopt precautionary measures before entering into matrimonial relation and chose their life partner after consulting health expertise and conduct HB electrophoresis tests, as the diseases are not curable but preventable and we can only save our offspring by adopting the preventive associations.
- To provide medical facilities to every needy persons in our working area.
- To provide Free medicines for Tuberculoses (T.B) patients by setting Medical camps,
- free Mobiles dispensaries in back ward areas.
- To provide awareness regarding Health, Social Welfare Education among the people who are ignorant and backward in the society.
- To provide Basic computer education.
- To provide awareness to the youth to participate in positive social activities and bad
- activities like addiction smoking, drugs and adultery etc.
ACHIEVEMENTS
FUTURE PLANS AND PROJECTS
- To
purchase land and construction of China
- To purchase Ambulance for the welfare (ORG) on free service to the deserving people pf the area. And our workers are working hard for travelling in buses or on by feet.
- To organize free medical camps against Polio, Aids, T.B, Hepatitis, Sugar, Heart Problems and etc.
- To established Primary Educational institution in remote area of our District.
- To established Computer institution for deserving students.
- To purchase X-Ray machine, Ultra Sound machine, E.C.G machine, C.T Scanner for Foundation for good treatment.
- To organize free blood bank including comprehensive cross match and screening for Hepatitis C and HIV provide by the blood bank. It is supervised by qualified and trained staff also trained consultants
FORMS OF THALASSAEMIA
There are two forms of Thalassaemia
- Thalassaemia Major
- Thalassaemia Minor (Trait0
THALASSAEMIA MAJOR
Thalassaemia major is sometimes known as Cooley’s anemia, Homozygous, Beta Thalassaemia or Mediterranean Anemia. It is serious inherited childhood anemia. Children with thalassaemia major cannot make enough hemoglobin, because of this, their bone marrow cannot produce enough red blood cells. The red blood cells that are produced are nearly empty.
THALASSAEMIA MINOR (TRAIT)
People with Thalassaemia Minor, sometimes known as Trait, carry Thalassaemia but they are not ill. They are completely healthy and normal but some of them have slight anemia. Most people with Thalassaemia Minor do not even know that they have it. It is only discovered if the person has a special blood test or if they have a child with Thalassaemia Major. It is important to know if you have Thalassaemia Minor later in life. The reason for this is that it may cause some problems if the person and their partner want to start family. Thalassaemia Minor’s red blood cells are also different from normal blood cells.
WHO IS LIKELY TO CARRY THALASSAEMIA
Number of people who are carriers of Thalassaemia around the world. People who are likely to carry the gene of Thalassaemia are people with Mediterranean decent, for example Cyprus, Egypt, Greece, India, Pakistan, Lebanon, Malta, Middle East, Turkey and some parts of South east Asia.
CAN THALASSAEMIA MAJOR PATIENTS ALSO CARRY OTHER ILLNESSES?
Thalassaemia major patients can also carry other illnesses such as Sickle Cells, diabetes, Liver dis-function and other illness that non thalassaemia people can get for example cancer.
WHAT KNOWN CAUSE FOR THALASSAEMIA?
There is not a known cause for Thalassaemia except that isinherited through the genes.
WHAT ARE THE SYMPTOMS? ARE THEY DETECTED EARLY IN CHILDHOOD?
Children with Thalassaemia major are normal at birth but become anaemic between the ages of three months and eighteen months. They become pale, do not sleep well, do not want to eat, and may vomit their feeds. If children with Thalassaemia major are not treated, they have miserable lives. They usually die between one and eight years of age.
WHAT IS THE “QUALITY OF LIFE” FOR A THALASSAEMIC?
A chronic illness always causes some limitation of quality of life, especially when it requires frequent and complex treatment, as Thalassaemia dose. The treatment should not interfere with a Thalssaemic’s life. In particular doctors and hospitals should make the effort to arrange out-patient visits and visits for transfusions so they interfere as little as possible with normal life. Treatment should not interrupt schooling or work.
HOW LONG CAN A PERSON WITH THALASSAEMIA MAJOR LIVE?
These days most Thalassaemic’s grow up to become adults, and earn their own living. Most also find a partner and get married. Now a number of thalassaemia major patients have their own children. It is very hard to know the answer for Thalassaemics who are well at present. The disorder and its influence are changing almost from day to day, because of advances in treatment. Thalassaemic patients are now living longer. Today it is reasonable to think that people with thalssaemia major, who have been well treated from the beginning, may well live as long as people without Thalassaemia. Only time will tell. Even though thalassaemics live with more risks than non Thalassaemic, because of the amount of medication and treatment they receive.
But all medical treatments include some risk.
But all medical treatments include some risk.
CAN PEOPLE WITH THALASSAEMIA MAJOR AND MINOR HAVE HEALTHY CHILDREN?
People with thalassaemia major can have babies only if their partner does not carry any sort of Thalassaemia. But all thalassaemia major’s patients children will carry thalassaemia minor. If a Thalassaemia major partner does not carry any thalassaemia gene none of the children would have thalassaemia major.
WHAT STAGES DOES A WOMAN WITH THALASSAEMIA GO THROGH STAES BEFORE, DURING AND AFTER PREGNANCY?
For a woman with Thalassaemia to have children they must have normal sexual development. Many young women
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with Thalassaemia are not having their periods, or whose periods have started and then stopped. In this case they can be treated medically so that they produce eggs. If they are not physically fit, a pregnancy could risky for them and the baby. An expected mother should be fit, meaning they must use their pump regularly, her serum ferritin level should be around 1000 and her heart and liver should not have been damaged by iron overload. However, even if they are not perfectly fit, there is a chance that they could have a fairly normal pregnancy. Women are advised to stop Desferal when they are trying to become pregnant, or as soon as they are pregnant. There is no evidence that desferal can harm the foetus, but in general it is a good idea for any pregnant woman to not take drugs during pregnancy. Mothers who breast feed can start taking desferal again as soon as the baby is born. Desferal does not pass from the mother’s body into milk and so cannot harm the baby. Before a woman with Thalassaemia decides to have a baby they must take account about the long term future, their own health and survival or whether they will have support from their families. The chance of having a baby with Thalassaemia minor decreases if their partners have Thalassaemia minor.WHAT IS THE MAJOR TREATMENT NOW?
The only treatment for Thalassaemia major is regular blood transfusions, usually every three or four weeks. Most children have these transfusions, usually every three or four weeks grow normally and live quite happily into their early twenties. but to live longer, they need other treatment as well.
After each blood transfusion the red cells in the new blood are broken down slowly over the next four months. The iron from the red blood cells stays in the body. If it is not removed. It builds up and can damage the liver, the heart and other parts of the body. If this damage is not prevented most people with Thalassaemia major die when they are twenty years old.
At present the only way to remove the extra iron from the body is to give injections of a drug called Desferal(correct name is Deferrioxamine) this medication starts between the ages of 4 to 8 years old. Desferal is injected under the skin. The injections are given using a portable battery operated pump. This slowly empties in a 5/10ml syringe over 10/12.5 hours. The pump is used 5-7 nights of every week; therefore treatment takes place in home. Usually the parents are responsible for this until the child is able to take over. Desferal pick up the iron and carries it out in the urine.
After each blood transfusion the red cells in the new blood are broken down slowly over the next four months. The iron from the red blood cells stays in the body. If it is not removed. It builds up and can damage the liver, the heart and other parts of the body. If this damage is not prevented most people with Thalassaemia major die when they are twenty years old.
At present the only way to remove the extra iron from the body is to give injections of a drug called Desferal(correct name is Deferrioxamine) this medication starts between the ages of 4 to 8 years old. Desferal is injected under the skin. The injections are given using a portable battery operated pump. This slowly empties in a 5/10ml syringe over 10/12.5 hours. The pump is used 5-7 nights of every week; therefore treatment takes place in home. Usually the parents are responsible for this until the child is able to take over. Desferal pick up the iron and carries it out in the urine.
DOES THALASSAEMIA PERSON NEED TO BE ON A SPECIAL DIET?
Thalassaemia major patients should try to keep away from high in iron foods as red meat, liver, kidney, greenleafy vegetables such as spinach, some breakfast cereals, wholemeal breads and alcohol. Although this is recommend, patients do not have to stick with this diet.
IS THE TREATMENT EFFECTIVE?
This treatment is very successful and most children treated with blood transfusions and desferal can now lead fairly normal healthy lives. But the treatment is unpleasant and often upsetting, it also interferes with their desire for an active social life sometimes medication is neglected.
HOW IS THE TREATMENT IMPROVING?
Treatment today is more advanced than what it was. A Thalassaemia person can enjoy a good quality life, lively in normal activities such as sports, study, work, marriage and family. An oral version in pill or liquid form, would greatly improve the quality and productivity of the lives of Thalassaemia major patients would be better. There have been scientists working on this pill it is knownas L1. the results from the L1 have been good except of one specific side affect called “neutropenia” which reduced the ability of the body to cope with infections so the Thalassaemic person has a risk to infections and can die due to this. Also scientists believe that a cure for Thalassaemia is possible through gene therapy and bone marrow transplantation. Gene therapy would correct the defected gene in Thalassaemia patients. This is done by transferring normal gene into the patients own bone marrow cells. But a bone marrow transplant proven to be a success however the odds against success with
- To organize old home for poor and needy persons, who ignored by their families.
Eldercare
In a country of 100 million (current estimate) older persons, 33% live below the poverty line, 90% are from the unorganized sector with no social security, and 73% are illiterate & dependent on physical labour.
CMWHC Help OLD Age reaches out to the underprivileged elderly through its various services in the areas of financial, health and emotional security.
CMWHC Help OLD Age is slowly moving from welfare to integrated age care services for the elderly in urban & rural areas. Expanding its scope of services quantitatively as well as qualitatively. In the recent past new services have been started such as Elder Helplines, Physio care and existing services are experimenting in new areas. One such example is that of the Mobile Medicare Unit (MMU) program. The MMU service in some areas not only provides basic health care, but is also delving into new initiative such as providing disability aids, shelter assistance, yoga, specialized home visits, and provision of psychological therapy among others.
Disaster Mitigation
We advocate for policies that benefit
- The Gynecology department should by facilitate with most modern equipment to provide timely assistance to poor and needy gynae patients in our area.
