The Manipal Hemophilia Society is the registered chapter of the Hemophilia Federation of India (HFI), New Delhi which is affiliated to the World Federation of Hemophilia, Montreal, Canada. It is a patient organization assisted by Medical and paramedical fraternity. It was inaugurated on April 17th 1999 and started operating from Kasturba Hospital, Manipal withunits operating in both in Manipal and Mangalore.



Objectives of the society:-
1. Identifying new cases of hemophilia and related bleeding disorders.

2. Provide anti-hemophilic factors through HFI at the lowest cost possible.

3. Provide comprehensive care through an inter disciplinary approach.

4. Improve quality of life of pwh (persons with hemophilia) through education, physiotherapy and economic rehabilitation.

5. Create awareness and educate patients, public and medical faculty through seminars, workshops or CMEs.

 

Outline of various activities of the society:-     
1) Medical care
          Comprehensive medical care is provided to the PWH (Patient with haemophilia) by the various medical specialties of Kasturba Medical College Hospital, Manipal and supportive care through the departments of Physiotherapy, Occupational therapy, Psychology department and Dental departments. In Mangalore ,treatment is provided at Kasturba Medical College and Government Wenlock Hospital.

          The life saving factor concentrates are procured through HFI, New Delhi and are available at Manipal at Rs. 6.50/unit. However most of the PWH are unable to afford the cost of the concentrates . In many situations of acute bleeding or emergencies, the society provides factors free of cost or on loan payable at installments. Surgical procedures undertaken for PWH include amputations, surgical removal of pseudo tumors, correction of deformities, circumcision and so on. Most of these procedures were undertaken by factor support from HFI and funds raised by the society and supported by the Manipal University.

          Diagnostic facilities for the diagnosis of hemophilia and other bleeding disorders including factor assay and inhibitor screen, VWF assay and platelet aggregation studies are available at the Hematology Lab, Kasturba Hospital, Manipal. This helps us in detection of new cases. Recently genetic analysis for the prevention of hemophilia has also been started in the Life Science centre , Manipal.

2) Regular comprehensive clinic
          Regular once a month clinic has been started  in Kasturba Hospital ,Manipal  on every second Saturday in 2009.  The Comprehensive Clinic for psychosocial support, occupational therapy, physiotherapy and dental clinics are also held in addition to medical and orthopaedic care. Genetic counseling is also offered at the clinic.

          This helps the patients to improve their quality of life and are able to continue their follow up sessions. This clinic is supported by the Manipal Foundation.

3) Summer camps
          “Asha Kiran 2003” – meaning `ray of hope’ was a 3 day children’s camp held at Manipal in 2003. Various activities such as dental clinics, morning physiotherapy sessions, interactive sessions, film show, magic show, picnic and boat rides are included. The camp provided a feeling of independence and self sufficiency to the children. It  educated them about their disease and provided them an opportunity to live and behave as normal kids, all away from home.

          “Asha Kiran 2005, 2008”  – They were  2 day camps held for PWH and their families. Concurrent sessions were held for children, youth and parents. Psychology clinics, patient interactions, computer games, film show ,picnics and such other fun activities were arranged in addition to educative talks on hemophilia

          “Asha kiran 2009” was as an exclusive youth camp . The theme of the camp was “Learn for togetherness". Vocational training, self infusion and psychological support in addition to picnics and interaction were held.

4) “Parichaya”
          Multi-disciplinary clinics were conducted at least once in a year. “Parichaya 2005” and 2007 wereinteractive sessions for the members to acquaint themselves to the newer members. It was an opportunity for members to share their problems. 

5) Economic rehabilitation
          Interest free loans of Rs.10,000/- each were given to 2 youths to initiate a business. One of them was Raghavendra Kharvi from a fisherman's background who started a business of selling oil for motorboats. Another youth started an STD booth. 2 other adult members were also given loans to upgrade their shops.

6) Awareness Programmes
          For general public – Periodic newspaper coverage of activities of the society, articles on hemophilia in English and Kannada. Poster display on hemophilia related issues at strategic points in Kasturba Hospital, poster competition, Hemophilia Special Crossword Puzzle, `Walkathon’ for Hemophilia are some of the activities undertaken during Hemophilia Day celebrations.