Dr Vikas Sharma & Proloy Sankar
Blood, the elixir of life, is very much needed to support the human system, but unfortunately some human system can’t retain the elixir because of a deadly disease, ‘Haemophilia’. The need of the hour is to aware every citizen of the meaning of the disease and to support the victims. In order to honour the victims nomenclature ‘Haemophiliacs’ every year April 17 is celebrated as World Haemophilia Day. The purpose is to raise awareness and pave way for a better world. It is celebrated every year to raise awareness and to create opportunities all over the world for the individuals who suffer from bleeding problems. In view of raising awareness, first we need to understand what is haemophilia? It is rare genetic disease passed down from families, 1 in 10,000. It, being a clotting disorder, even a little injury results in significant bleeding. It is a fatal disease as due to no apparent cause, internal bleeding harms the body organs and tissues. The current treatment options focus mainly on controlling the symptoms rather than treating. In order to raise awareness among the population, awareness of symptoms is crucial that include inflammation of the joints, especially elbows, knees, muscular bleeding involving tissues, gum bleeding, post circumcision bleeding and faecal bleeding, to name a few. In view of helping our distinguished subjects, treatment comprises of blood clotting replacement which can be accomplished by injecting industrially processed factor concentrations. This being a small step can help the victims to halt bleeding episodes and perhaps even avoid major bleeding episodes by completing the injection regime. The best way is to get excellent treatment from well versed physicians. The perfect idea of the therapy is to be in support of a thorough Haemophilia Treatment Facility as it educates the patients on how to be healthy in the long turn. The optimum care of the haemophilia patient is multidisciplinary, comprehensive effort which should bring together the patient, his family, the haematologist, orthopedic surgeon, gastroenterologist, physiotherapist, occupational therapist, dentist, social worker, hospital administrators and support groups.
While the holy grail of haemophilia treatment is to correct the genetic effect through gene therapy, this approach remains unrealized potential. There are huge numbers of challenges in the management of haemophilia. One of the major solutions to all the challenges that a haemophilic patient faces, is the creation of active patient’s organization. Moreover, the government and various management bodies also act as a sounding board for adopting advanced treatment options and for mobilizing funds to improve the physical, social and economic well being of haemophilia affected victims. The management of the disease encompasses significant challenges which can be summarized as:
- Scarcity of healthcare infrastructure
- Lack of human resources suitable for patient care
- Competing healthcare priorities of government
- Minimal awareness across the medical profession
- Non availability of factor concentrates
- Challenges due to inhibitor developing
The solutions are not easy but development of a consortium in association with the patients can be an initial step which can change the scenario. As we mark World Haemophilia Day this year, it is apt for us to reflect upon the issues that we face collectively as patients, their families and clinicians, in striving to make living with haemophilia as normal as possible. The sole purpose of this day is to get together with our loved ones. This year in view of the ongoing COVID-19 pandemic, is all about remaining at home and connecting with our beloved haemophiliacs via internet or media. The theme of this auspicious day can be summarized as:
4Individuals with haemophilia should be provided adequate medical help
4Should get a platform to share their stories and motivate other subjects
4Online and offline media should be provided so that they can express themselves
4Aware the world about the dignified day ‘World Haemophilia Day’ by distributing flyers and in online media.
Last but not the least a single message for our fighters as:
Please keep in mind, on this World Haemophilia Day, that you’re not fighting this battle individually. Solicit assistance and provide a shoulder to rely on.
(The authors are from Division of Biochemistry, SKUAST-Jammu).