Number of Participants: 33
The Haemophilia Training and Awareness programme for patient and families was conducted on 30th October 2013, under the preview of the Central Network coordinator and Head moderator, Dr. Naresh Gupta, Director Professor, Dept. of Medicine, MAMC at Lok Nayak Hospital, New Delhi, India. The audience consisted of patients with Haemophilia (PWH) and their family members. All participants were escorted to the seminar room followed by a quick round of registration process. All the patients were welcomed by a warm speech by Dr. Gupta and were being addressed about the significance of the awareness programme, and also to provide necessary preventive measures to tackle hemophilia in day to day activities. Amongst the invitees twenty-two patients and their family members attended the HATS programme for the first time. Dr. Gupta defined the objectives of the HATS programme which is to educate the patients and provide them a better understanding of their clinical condition, boasting better medical care, imprinting motivation and better compliance with the society on a psychological level. The patients were also introduced to the newly formed Haemophilia Self-Help group (H-SHG) and were also announced to be soon sorted and categorized according to the feasibility under the different heads of the SHG working committee. Also the patients were informed to join the self-infusion training program which is scheduled at the HDCC along with the issue of patient identity card.
Dr. Sartaj Ali, Medical Officer, HDCC educated the patients and their relatives on the diagnosis of haemophilia. Dr. Ali discussed that inadequate knowledge, lack of proper laboratory diagnosis and insufficient supply of affordable and safe factors are the three major hurdles that paralyze the patient care at most of the sub-infrastructural institutions located in the urban or rural settings. Educating PWH, healthcare providers and the population at general is necessary to establish better awareness and treatment facilities for the haemophilic community. To enlighten the patients and relatives on the diagnosis, Dr. Ali further spoke that detection of haemophilia can be quick in those cases which have a known family history with positive prevalence of haemophilia in their pedigree chart such as maternal grandfather, maternal uncle, brother or maternal aunt’s son or are severely affected on the other hand diagnosis can often be delayed in new mutational cases without any previous family history or less severely affected individuals. Further he alos discussed upon the various coagulation assays for the detection of factor deficiency. Patients were also educated on inhibitor development and reduced factor efficiency to answer the question of those PWH who complaint against the therapeutic potential of the AHF’s. The inadequate clinical response to post factor infusion was a result of antibody development against the extraneous VIII or IX protein. The condition is acoompained with continued bleeding episodes which does not improve with usual factor replacement and the treatment is supplemented with cogyaltion bypass agents. However, the risk of inhibitor development is mostly observed in severe cases during the first fifty exposures and can be diagnosed under the routine testing.
In the second half of the programme Dr. A.K. Mittal educated the patient’s genetic counseling and marriage issues. Dr. Mittal spoke that haemophilia being a genetic disorder it is often seen that PWH or confirmed carriers hide the truth from their partner’s knowledge before marriage which may lead to unfriendly and unfaithful end to any relationship. Therefore Dr. Mittal advised all the patients to be transparent n such situations specially marriage and also educated the them as to how they can reduce the risk of a new born with haemophilia. He advised that genetic counseling is one such process that can help couples evaluate and understand their likelihood of passing this genetic disorder also provide alternate options. A pedigree evaluation of the family history can also suggest if the genetic testing is needed or not, evaluate the test results and help the prospective parents understand the implications so that they could reach an informed decision on how to proceed further. Prenatal diagnosis was also discussed to detect genetic defects and opt for termination of pregnancy incase if the fetus is affected.
The event was concluded with an ending speech by Dr. Gupta, and thanked all the audience for attending the programme and promised to keep the good work on and soon categorize the patients under respective H-SHG t o facilitate better care.
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