Cuts and scrapes have been a part of everyone’s childhood, however, for some people, even such tiny injuries can be life-threatening. One such condition is haemophilia which reduces the blood's ability to clot, which can lead to uncontrolled bleeding.i
The condition is most commonly found in men and affects one in 5,000 male births.ii
Individuals with haemophilia are not allowed to play impact sports for the fear of bleeding. Also, the severe pain associated with these bleeds is difficult to explain to acquaintances, eventually reducing a patient’s quality of life. But how many of us know about this condition? Even if we know something about it; is there a connect; do we understand what a patient goes through? No; since this condition is extremely rare and simply not spoken about.
The impact of a rare disease like haemophilia goes beyond just the physical aspect. There is a huge stigma attached to this condition that has a major impact on the emotional and mental well-being of the patient.
Effective communication can help patients, at-risk and affected communities and caregivers understand the condition better, leading to better management and prevention of complications. Moreover, it can help patients feel less alone and more supported, leading to improved emotional and mental well-being. Hence, it is crucial to talk about such conditions to break the barriers to communication.
A rare genetic blood disorder, people with haemophilia do not have certain clotting factors but it can be successfully managed by replacing them from time to time. However, the rarity of the condition often translates to a multitude of challenges. The chief among these includes a lack of awareness among patients, caregivers, and primary care physicians, which often results in delayed diagnosis. Moreover, there is limited knowledge about rare diseases in the general public, hence the delay in diagnosis increases the suffering of the patients substantially. Apart from this, a lack of diagnostic facilities and the exorbitant expense of examinations, leave many people undiagnosed. If inadequately managed, frequent internal bleeding can result in arthritis, joint damage, and even death.
Early intervention is often key to successfully managing the condition and preventing further complications. Apart from traditional ones, several cutting-edge prophylactic treatments are also available for patients with this condition. Hence, building a better doctor-patient connection is the key to raising awareness about this condition and ensuring better control and prevention of bleeds.
It is essential to create awareness amongst all stakeholders, including patients, caregivers, primary care physicians, and the public to understand the problem and find solutions. We as communicators as well as healthcare organizations, NGOs, and patient support groups can play a significant role in this regard. A collaborative effort from all stakeholders is needed to ensure that no one is left behind.