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Scientific CentersCommunity Service Center (CSC)ProgramsThalassemia Program
Thalassemia Program
In cooperation with the Palestinian Society of the Friends of Thalassemia Patients and the
National
Center
for Blood Diseases, the CSC has built a volunteer team to help patients who suffer from this genetic blood disorder, of which there is a high incidence among Palestinians. The CSC provides training to numerous volunteers who provide support and organize blood drives which yield about 30 blood units per month. They also develop group activities for afflicted children and their families. Currently, this program has 50 volunteers serving 70 patients.
History:
The CSC started the Thalassemia program in 1999, working all over theWest Bank
area to insure services for all Palestinians living in refugee camps, villages and cities. Upon the beginning of the Second Intifada in late 2001 and the reoccupation of the
Palestinian
Territories
by the Israeli Defensive Forces, movement became severely limited. Unfortunately, the Israeli military roadblocks and checkpoints made the continuation of services throughout the West Bank impossible, and the CSC began serving only
Nablus
, its four refugee camps, and more than fifteen surrounding villages. Despite the current situation, the CSC staff hopes that it will be possible to offer these services to the entire
West Bank
again someday in the future.
What is Thalassemia?
Thalassemia is the most common, inherited single gene disorder in the world. Early comprehensive treatment has changed Thalassemia from a fatal pediatric disease to one with which patients can survive and live healthy, productive lives throughout adulthood.
What we do?
1- Demonstrate lectures … raise the awareness …stop the disease
We support families and provide them with information concerning psychological wellness, cultural issues and counseling for family planning and marriage. It is our hope that by providing education about the disease, we can raise awareness, encourage people to get tested for the trait, and spread knowledge about comprehensive treatment to the local community.
2- Secure Blood Units
Nablus
faces. The
Community
Service
Center
is fortunate to have a rich source of volunteers, since every student at
An-Najah
University
must serve thirty-two hours of community service in order to graduate. The CSC has made an arrangement with the university so that donating a unit of blood counts as sixteen hours of the service. This helps students complete their service hours while providing an invaluable service to the victims of this disease.
3- Psychosocial support
During the comprehensive clinic visit, patients and their families meet with a hematologist, pediatrician, endocrinologist, gastroenterologist, nutritionist, nurse practitioner, genetic counselor, and a psychologist, in addition to social worker from the CSC.
Psychosocial Complications of Thalassemia
Any family with a child suffering from Thalassemia undergoes psychosocial changes throughout the care of their child. Anticipatory counseling, therapy, and at times pharmacologic intervention can have a major impact on quality of life. In the early years, parents are severely shocked that their child, previously thought to be normal, has a chronic, fatal disease. Additionally, as is well known, Palestinian society is a conservative culture where sickness it very hard to accept and deal with. Social workers drive the families for the best training to care for their children while finding ways to adapt within this closed society. This is complicated by extreme feelings of guilt resulting in overprotective behavior, which are damaging to the family unit. Early psychological care may prevent such problems. Adolescence is a particular period of crisis and can be complicated by hopelessness, despair, seclusion, denial and non-compliance.
School age children begin to look more towards their peers to assess their competence in academic and social arenas. Thus the CSC’s well-trained social workers try to support and encourage academic and social excellence, using regular visits to find and encourage areas where the patient excels. The social workers also encourage the parents to listen to and take seriously their children’s questions about their illness and medical care, telling them that they should answer questions as clearly and honesty as possible. When they are unsure of the answer or how best to speak with their children, the CSC’s staff helps them find the right words.
Given the prevalence of Thalassemia in Palestinian society, the need for psychotherapy is obvious. Without this type of psychological support, many more patients with chronic pain would find it too difficult to cope with their situation, especially in such a closed society, which though providing a special challenge to families facing this disease, can also offer an unparalleled degree of support.
Special Activities for Thalassemia Patients
Children afflicted with this disease lack energy and stamina and therefore become tired quickly. Over the years the children are at high risk of developing diabetes, osteoporosis and hepatitis as a result of the repeated but necessary blood transfusions. Unfortunately, to maintain a check on these side effects, they also have to undergo periodic painful biopsies.
Children and families who are experiencing Thalassemia also need support that will help them deal with the psychological and social impact of the disease. Psychosocial therapy helps people develop skills to cope with the challenge of overcoming Thalassemia
Psychosocial therapy includes “creative therapies” such as art, music, dance and play therapy in addition to psychological counseling such as family, individual and marital counseling.
The CSC also offers bereavement counseling. The services included under this heading are therapeutic and delivered by professionals
Community
Service
Center
organizes regular social activities such as
1- Social gatherings with meals and refreshment.
2- Fun and games
3- Music parties
4- Family counseling
5- Other social events
Behind each kid is a story and behind each story there is a very sad kid sitting at home waiting for hope.
Each month two hundred blood units are received by one hundred patients, mostly children, from 38 families located primarily in Balata, Askar, and Al Aien Refugee Camps,
Nablus
city and its surrounding villages. Each patient needs a unit of blood every month or every twenty days while some others need a transfer every couple weeks.
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Scientific CentersCommunity Service Center (CSC)ProgramsThalassemia ProgramThalassemia Program
In cooperation with the Palestinian Society of the Friends of Thalassemia Patients and the
History:
The CSC started the Thalassemia program in 1999, working all over the
What is Thalassemia?
Thalassemia is the most common, inherited single gene disorder in the world. Early comprehensive treatment has changed Thalassemia from a fatal pediatric disease to one with which patients can survive and live healthy, productive lives throughout adulthood.
What we do?
1- Demonstrate lectures … raise the awareness …stop the disease
We support families and provide them with information concerning psychological wellness, cultural issues and counseling for family planning and marriage. It is our hope that by providing education about the disease, we can raise awareness, encourage people to get tested for the trait, and spread knowledge about comprehensive treatment to the local community.
2- Secure Blood Units
3- Psychosocial support
During the comprehensive clinic visit, patients and their families meet with a hematologist, pediatrician, endocrinologist, gastroenterologist, nutritionist, nurse practitioner, genetic counselor, and a psychologist, in addition to social worker from the CSC.
Psychosocial Complications of Thalassemia
Any family with a child suffering from Thalassemia undergoes psychosocial changes throughout the care of their child. Anticipatory counseling, therapy, and at times pharmacologic intervention can have a major impact on quality of life. In the early years, parents are severely shocked that their child, previously thought to be normal, has a chronic, fatal disease. Additionally, as is well known, Palestinian society is a conservative culture where sickness it very hard to accept and deal with. Social workers drive the families for the best training to care for their children while finding ways to adapt within this closed society. This is complicated by extreme feelings of guilt resulting in overprotective behavior, which are damaging to the family unit. Early psychological care may prevent such problems. Adolescence is a particular period of crisis and can be complicated by hopelessness, despair, seclusion, denial and non-compliance.
School age children begin to look more towards their peers to assess their competence in academic and social arenas. Thus the CSC’s well-trained social workers try to support and encourage academic and social excellence, using regular visits to find and encourage areas where the patient excels. The social workers also encourage the parents to listen to and take seriously their children’s questions about their illness and medical care, telling them that they should answer questions as clearly and honesty as possible. When they are unsure of the answer or how best to speak with their children, the CSC’s staff helps them find the right words.
Given the prevalence of Thalassemia in Palestinian society, the need for psychotherapy is obvious. Without this type of psychological support, many more patients with chronic pain would find it too difficult to cope with their situation, especially in such a closed society, which though providing a special challenge to families facing this disease, can also offer an unparalleled degree of support.
Special Activities for Thalassemia Patients
Children afflicted with this disease lack energy and stamina and therefore become tired quickly. Over the years the children are at high risk of developing diabetes, osteoporosis and hepatitis as a result of the repeated but necessary blood transfusions. Unfortunately, to maintain a check on these side effects, they also have to undergo periodic painful biopsies.
Children and families who are experiencing Thalassemia also need support that will help them deal with the psychological and social impact of the disease. Psychosocial therapy helps people develop skills to cope with the challenge of overcoming Thalassemia
Psychosocial therapy includes “creative therapies” such as art, music, dance and play therapy in addition to psychological counseling such as family, individual and marital counseling.
The CSC also offers bereavement counseling. The services included under this heading are therapeutic and delivered by professionals
1- Social gatherings with meals and refreshment.
2- Fun and games
3- Music parties
4- Family counseling
5- Other social events
Behind each kid is a story and behind each story there is a very sad kid sitting at home waiting for hope.
Each month two hundred blood units are received by one hundred patients, mostly children, from 38 families located primarily in Balata, Askar, and Al Aien Refugee Camps,