World Hemophilia Day, observed annually on April 17th, serves as a crucial platform to raise awareness about this often misunderstood bleeding disorder. The aim is to provide insight into what hemophilia is, its impact on individuals and families, recent advancements in treatment, and ways to support those affected.
Hemophilia is a genetic disorder characterized by the inability of the blood to clot properly, leading to prolonged bleeding episodes even from minor injuries. It primarily affects males, although females can be carriers. Hemophilia is classified into types A, B, and C, depending on the deficient or defective clotting factor involved.
Impact on Individuals and Families: Living with hemophilia is not just a medical condition; it's a daily reality that affects every aspect of life for patients and their families. The constant threat of bleeding episodes looms over daily activities, making even the simplest tasks a potential hazard. From a young age, individuals with hemophilia learn to navigate a world where a minor scrape or bruise can escalate into a serious medical emergency.
Physical Impact: The hallmark of hemophilia is spontaneous and prolonged bleeding, particularly into joints and muscles. Recurrent bleeding episodes can lead to debilitating joint damage, chronic pain, and limited mobility. Simple activities like walking or writing can become arduous tasks for those with severe hemophilia.
Emotional Impact: The emotional toll of hemophilia extends beyond the physical symptoms. Patients often face feelings of frustration, anxiety, and isolation as they grapple with the limitations imposed by their condition. The fear of bleeding incidents can lead to heightened anxiety and hypervigilance, affecting mental well-being and overall quality of life.
Impact on Caregivers: For parents and caregivers of individuals with hemophilia, the responsibilities can be overwhelming. Balancing the needs of a child with hemophilia with everyday tasks and obligations requires tremendous dedication and resilience.
The common symptoms of hemophilia includes:
1. Prolonged Bleeding: Individuals with hemophilia may experience prolonged bleeding after minor cuts, injuries, or surgeries. This is often the most prominent symptom and can be a key indicator of the condition.
2. Easy Bruising: Hemophilia can cause easy bruising, with bruises appearing more frequently and with less trauma compared to individuals without the condition. Bruises may be larger than expected and take longer to heal.
3. Spontaneous Bleeding: Bleeding can occur spontaneously without an obvious cause, particularly in joints, muscles, or other soft tissues. This can lead to symptoms such as joint pain, swelling, and limited mobility.
4. Excessive Bleeding from Dental Procedures: Individuals with hemophilia may experience prolonged bleeding following dental procedures such as tooth extractions or oral surgery. This can be a significant concern and may require special precautions and coordination with healthcare providers.
To mark World Hemophilia Day, the MedBound app, a renowned online platform for Health care professionals, hosted a discussion.
It received few responses from a wide range of professionals. Here are some contributions.
Lavanya Beeraboina, B Pharm, said that we can promote inclusivity through education, developmental policies, and awareness.
Dr. Anjali KV, BDS, pointed out that social media plays a relevant role in creating awareness among people.
Dr. Nirainila Joseph, BDS, MS. Included education campaigns, sensitivity training, accessible accommodations and resources etc., as an important part in promoting inclusivity & understanding in her bound.
Aditi Madathingal, BSc Biotechnology, said "Raising awareness through campaigns, ads,and social media can bring a change in understanding the illness." in her bound.
Aniket Bakare, MBBS Student, Bishkek, Kyrgyzstan, encouraged open discussions to raise awareness.
Susmita Bhandary, M. Pharm, talked about supportive environments for the individuals with Hemophilia and their family in her bound.
Dr. Manav Chaturvedi, MDS Oral Pathology and Microbiology, stated that, "Empowering patients through self-management programs is essential."
M Subha Maheswari, MSc Biotechnology, further took on the discussion on MedBound by asking about tips or advice for people newly diagnosed with Hemophilia.
Akashita Panjla, MSc Science and Technology, gave a few pointers:
1. Hemophilia patients should avoid bleeding injuries.
2. Regular checkups should be scheduled.
3. Regular exercise and physical activity can help individuals with hemophilia.
Dr. Vineesha Vasudevan, BDS, talked about the medications to avoid for patients with Hemophilia.
Priyanka Pandey, BPT, MA Sociology, mentioned that high-contact sports like Football should be avoided.
Advancements in Treatment:
Over the past few decades, significant progress has been made in the treatment of hemophilia, revolutionizing the management and outlook for patients living with this condition. From traditional clotting factor replacement therapy to innovative gene therapy approaches, the landscape of hemophilia care has undergone remarkable transformation, offering new hope and improved outcomes for patients.
Clotting factor replacement therapy
Ended half-life products.
Non-replacement therapies
Gene therapy
Personalized medicine
The field of hemophilia treatment has seen remarkable advancements in recent years, offering patients a range of therapeutic options tailored to their individual needs. From traditional clotting factor replacement therapy to cutting-edge gene therapies, these advancements have transformed the management of hemophilia and hold the promise of a brighter future for patients living with this challenging condition. Continued research and innovation will be essential to further improve treatment outcomes and ultimately achieve the goal of a cure for hemophilia.
Early detection of hemophilia is paramount for improving outcomes and quality of life for individuals affected by this genetic disorder. Given that hemophilia is a lifelong condition with the potential for serious complications, early diagnosis allows for prompt initiation of appropriate treatment and interventions to mitigate the risk of bleeding episodes and associated complications.
Genetic screening
Newborn screening
Recognition of early signs and symptoms
As we commemorate Hemophilia Day, let us strive to increase understanding and support for those affected by this challenging condition. By raising awareness, promoting research, and advocating for accessible care, we can empower individuals with hemophilia to lead fulfilling lives and work towards a future free from the limitations imposed by this disorder.
References:
• National Hemophilia Foundation
• World Federation of Hemophilia
By Rasheeka MP
