Nepal Hemophilia Society

NEPAL HEMOPHILIA SOCIETY

Introduction :
Nepal Hemophilia Society (NHS) was established in 1992 with an objective to assist the persons with bleeding disorders in every possible way for the control of their bleeding and find solution of the problems associated with it. NHS is registered health related non-profit making NGO affiliated to World Federation of Hemophilia.

Hemophilia is a congenital bleeding disorder caused by the deficiency of the clotting factor in the blood. Hemophiliac bleeds continuously on an injury. Bleeding if not controlled immediately can become a threat to the normal functioning of the effected organs and even the life. A hemophiliac lives from crisis to crisis. Internal bleeding in joints eventually results in crippling of the patient by the time he steps his youth.

This disease is incurable but temporarily manageable. The only treatment is infusion of blood, plasma or the anti-hemophilic factor at every instance of the bleeding episode. The treatment is prohibitively costly. Physiotherapy is also very important for person with hemophilia (PWH).

Activities carried out by NHS :

Only 35 Person with Hemophilia in the beginning.
Office at Nepal Red Cross Society, Blood Transfusion Services, KTM.
In 1996 grant assistance from German Embassy was used to purchase 2 Freeze (one –20°C, one ordinary) physiotherapy equipments and medicine.
Mr. Shyam S. Panday went to Barcelona, Spain in 1995 and a good relation was started with Hemophilia Center Barcelona and Hemophilia Society Spain.
Donation of a Centrifuge machine from Barcelona,Spain – 1996, Handed Over to Nepal Red Cross Society Blood Transfusion Center.
Another Centrifuge machine was received from Victoria Eugenia Barcelona, Spain in 1998 and handed over to NRCS BTS Kathmandu.
Participation in XXIII Hemophilia Congress at the Hague in 1998 with the Support of World Federation of Hemophilia by Gen. Secretary D.R.Adhikari. Met Brian o’ Mahoni President - WFH and Swedish Hemophilia Society, (FBIS) members and proposed for twinning programme.
Dr. Ranjan P Singh then chairman Visited Denmark and talked with Mr. Terkel Andersen President Danish Hemophilia Society and Swedish Hemophilia Society members to start a project within twinning program
Training at International Hemophilia Training Center (IHTC):

              a) Dr. B. L. Bajracharya, Pediatrician ,Bangkok 1994
              b) Dr. M. P. Shrivastava, Ortho.surgeon - Israel 1998
              c) Mr. Kedar P. Karanjeet, Lab.Technician ,Malmo,Sweden 1999

Visit of Executive Members from International Hemophilia Societies :

Mr. Ashok B. Verma Gen. Secretary Hemophilia Federation India 1995
Terkel Anderson President Danish Hemophilia Society 1998
Mr. Patrik Ostberg Vice President, Birgitta Rehnby Exe. Director, Michel Anderseen Youth committee chairman, Swedish Hemophilia Society and Mr. Poul Eik Jorgensen Danish Hemophilia Society-1998 and 1999
L. A. Kelley President LIGHT USA, Dr. Tahir Shamsi Hematologist from Pakistan ,1999 and April 2000 for workshop.
Twinning program was approved by WFH and activities were started after the visit of Birgitta Rehnby Exe. Director Swedish Hemophilia Society, Patrik Ostberg Vice president FBIS and Gunilla Hogling Programme Officer SHIA in February1999
Leadership training workshop Murcia, Spain 1999:

a.Mr. Shyam S. Panday
b.Mr. Suman Dhungana

First Hemophilia Care Unit Started at Bir Hospital Kathmandu 1999.

Program/Activities:

Registry of Person with Hemophilia (nation wide)
Organizing Summer & winter camps, interaction program, Regional meetings
Publications SATHI, (7th issue) Hemoguide, Poster, I.D Card for PWH hemophilia Bulletin.
Counseling of Person with Hemophilia (P.W.H)
Management of F.F.P, Cryo, Precipitate Factor concentrates for treatment
Making plan and action for the advancement of Hemophilia care.
Good relation with W.F.H and other International Hemophilia Societies and National Organizations.
Diagnosis, counseling and psychosocial support to PWH and guardian.
Workshop on ''Medical Leadership for Hemophilia Care In Nepal'' on 21-22nd April,2000 with support of LIGHT USA.

Current Situations :

Person with Hemophilia (PWH) registered 110+7 in 1999.

        a. - Factor VIII - 40 +5
            - Factor IX - 12
            - Factor X - 2
            - Rest Undiagnosed
        b. Life Member -120
        c. Helping Member -1 (Japan)
        d. Factor assay - Central Lab/ TU Teaching Hospital
        e. Hemophilia Care Unit - Bir Hospital
        f. F.F.P Cryo available from NRCS, Blood Transfusion Center
        g. Well equipped own office
        h. Staff member - 2
        i. 16 member Central Executive committee, election in every two years
        j. Limited stock of Factor concentrate to tackle emergencies
        k. Twining program with Swedish Hemophilia Society for 1999 - 2000
        l. Seven general assembly conducted till now, where all PWH guardians and Executives meet and discuss the problems
          and find solution.

Constraints :

Financial problem for sustainable development.
Well-equipped Hemophilia Care Centers with all facilities of hemophilia treatment.
Medical leader to start hemophilia clinic and handle Hemophilia Care Center.
Regular supply of factor concentrates and bloods components, FFP and Cryo precipitate.

Future Plan :

To set up Office in its own building with support of Government and international support.
To set up a well equipped Hemophilia Care Center under Hematology Department with skilled manpower and start hemophilia clinic.
Access to regular supply of Factor concentrates for every PWH.
Work for further advancement of hemophilia care.
Start fund raising program for sustainable development.
Seek Government support for treatment.
Training for medical persons.
Educational program for P.W.H /guardians.
Publications
Extend regional chapters.

NHS Mailing Address :

        Nepal Hemophilia Society
        GPO Box: 6046,
        Kathmandu, Nepal

Tel: 977-1- 472450 or 250608
Fax: 977-1-256105

Email: [email protected] and [email protected]

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