Thalassemia Rehabilitation Fund in Sri Lanka
Rehabilitation of Thalassaemia Patients and Thalassaemia Prevention Programme – 2008/2009
Thalassaemia is a disease, highly prevalent in northwestern province specially in Kurunegala district comparing to other districts in the country. There are nearly 1500 patients all over the country. Since the establishment of National Thalassaemia Center at Kurunegala (1994), according to our own register, 693 patients already registered and 565 patients are currently undergoing treatments. Annually about 60 – 70 new patients get registered in NTC.
Thalassaemia is a genetically inherited, non curable, but easily preventable disease. It is a heterogeneous group of genetic disorder. The production of normal hemoglobin is partially or completely suppressed in this disease. Treatment for thalassaemia is costly and needs life long therapy. As the disease is inherited, the best way of preventing thalassaemia is avoiding marriages between carriers.
As other chronic and incurable diseases it causes major public health problems and has important psychosocial impact between the patients and their family members. Proper understanding between the patients and their family members about the disease and its treatment has a critical effect on patient’s survival. If not, leads to increase the risk of disease complications and poor survival. Also proper rehabilitation of patients and family members markedly reduce the psychosocial impact on their families.
Prevention & rehabilitation are the primary importance in overall management of the disease. Treatment of the disease will only cause much burden to the curative sector. At present National Thalassaemia Center at Kurunegala needs more than 600 pints of blood and Rs.7.5 million worth of Desferrioxamine monthly. Iron chelation by Desferrioxamine is done with a machine, which costs Rs. 50,000. Therefore prevention of the occurrence of new cases is mandatory. It can be achieved by increasing the awareness to target population, including general public and carrying out a good, wide spread screening programme.
Our main aims are
1 Eradication of the deadly disease from Sri Lankan Society and next generation
2 Rehabilitation of suffering patient & their families
On the aspect in treating and rehabilitating thalassaemia patients, following are the ways of helping these innocent patients.
1 Thalassaemia Prevention Programme - Sponsorship or funding regarding preparing printing materials like posters, banners and handbills are very essential in delivering the message to the public in the prevention programmes.
2 Purchasing certain medicines – there is a current shortage of some medicines, which are essential for the management of thalassaemia patients.
Eg: - • Calcium tablets to prevent hypocalcaemia and carp pedal spasms.
Drug name: - Kalzana, Alfazip Approximate price Rs. 10/=each tablet.
• Hormone replacement tablets -
Drug name – Premarine, Novofem
• Drugs reducing oxidative stress
Drug name - Vitamin E
3 “Dividiriya” – The Scholarship Programme for thalassaemic children which provides Rs. 500/= per month per each Thalassaemia patients for their monthly expenses in treatments.
4 "Nana Piyasa" Children and Youth Library - A new library was established to uplift the psychological well being of the thalassaemic children. Books specially novels and furniture (steel book cupboards and book racks) are necessary to upgrade the library for a better service.
5 27 G butterfly needles - For the purpose of subcutaneous Desferrioxamine injections. 27 G needles will allow less painful and less complication experience in iron chelation.
6 Desferrioxamine infusion pumps –there is a shortage of 30 machines (Approximate price of each machine Rs. 50,000) for the Thalassaemia major patients, which is essential for the iron chelation to prevent them from several deadly complications such as Diabetes mellitus, Heart failure, liver failure, etc.
7 Account currently maintaining in National Thalassaemia Center
Rehabilitation fund
Account Name : Thalassaemia PR fund
Account no : 007100004602
Bank : NDB Bank – Kurunegala branch
Prevention fund
Account Name : Thalassaemia Prevention fund
Account no : will be notified in few days time
Bank : NDB Bank – Kurunegala branch
Investigation fund
Account Name : Kurunegala Thalassaemia Association
Account no : 012-2-001-0-6905993
Bank : Peoples Bank – Hospital branch
Your kind helping hand in this regard is highly appreciated. It will be a great effort in lifting up the living conditions and improving the survival of Thalassaemia patients. Also this will be the first footstep in eradicating the deadly Thalassaemia disease from Sri Lanka.
Dr. Ashok Perera
Programme for Thalassaemia & Rehabilitation
National Thalassaemia Center
Teaching Hospital
Kurunegala
Sri Lanka
Dr. Mahinda Rankothge
Consultant Paediatrician
National Thalassaemia Center
Teaching Hospital
Kurunegala
Sri Lanka
Tel:94372222261/2
