World Hemophilia Day: Spreading Awareness and Sensitivity towards Hemophilia

Introduction

Every year, 17 April marks World Haemophilia Day, a day dedicated to raising awareness about a rare bleeding disorder that silently affects over 1.36 lakh Indians, yet remains shrouded in ignorance (Haemophilia Federation India, 2023). For those living with haemophilia, life hangs “on the tip of a needle”—a metaphor for their dependence on frequent clotting factor injections and the fragility of their existence. This blog delves into their unseen battles, the systemic gaps that amplify their trauma, and how collective empathy can transform their lives.

"Haemophilia is a bleeding disorder where blood doesn’t clot properly, making bleeding hard to stop. Even a minor injury can lead to excessive bleeding if not treated. Patients often require infusions of clotting factor concentrates (through injections) to manage the condition. This reliance on needles for treatment, and the constant vigilance to avoid injury, inspire the metaphor “life on the tip of a needle."

What is Haemophilia?
Haemophilia is a genetic disorder where the blood lacks clotting factors, leading to prolonged bleeding even from minor injuries. There are three types:

1. Haemophilia A (Factor VIII deficiency): Most common, affecting 1 in 5,000 males (WHO, 2022).
2. Haemophilia B (Factor IX deficiency): Affects 1 in 30,000 males.
3. Haemophilia C (Factor XI deficiency): Rare and milder, affecting both genders.

Severity Levels

The severity of haemophilia is determined by the amount of clotting factor present in the blood:

• Mild Haemophilia: 5-40% of normal clotting factor levels. These individuals may only experience bleeding problems after significant injuries or surgeries.
• Moderate Haemophilia: 1-5% of normal clotting factor levels. These individuals may experience occasional spontaneous bleeding episodes and prolonged bleeding after injuries or surgeries.
• Severe Haemophilia: Less than 1% of normal clotting factor levels. These individuals experience frequent spontaneous bleeding episodes, often into joints and muscles, even without apparent injury (Srivastava et al., 2020).

Severe Haemophilia (clotting factor levels <1%) causes spontaneous internal bleeding, often into joints and muscles, leading to chronic pain and disability (Srivastava et al., 2020). It means that the person with Haemophilia can bleed without any injury also. This really is intriguing and life-threatening.

Health Conditions Associated with Haemophilia

Living with haemophilia means navigating a complex landscape of health challenges:

Joint Damage and Arthritis

Repeated bleeding into the joints (haemarthrosis) can lead to chronic joint damage, a condition known as haemophilic arthropathy. Over time, this results in chronic pain, limited mobility, and early-onset arthritis (Rodriguez-Merchán, 2021).

Muscle Bleeds

Bleeding into muscles can cause pain, swelling, and limited movement. If not treated promptly, it can lead to compartment syndrome—a painful condition where pressure builds up within the muscles, potentially causing permanent damage to muscles and nerves (Escobar et al., 2021).

Intracranial Haemorrhage

One of the most severe complications is bleeding in the brain, which can occur after head injuries or spontaneously in severe cases. This can be life-threatening and may cause long-term neurological damage (Zanon et al., 2019).

Inhibitor Development

Approximately 20-30% of individuals with severe Haemophilia A develop inhibitors—antibodies that neutralize the clotting factor treatment, making it ineffective. This complication makes treatment more challenging and expensive (Peyvandi et al., 2022).

 The Trauma of Living with Haemophilia

Haemophilia inflicts not just physical trauma but also profound psychological, economic, social, and professional challenges:

Physical Trauma

The physical pain associated with haemophilia is often intense and multifaceted. Individuals with severe haemophilia frequently experience spontaneous bleeds into joints and muscles, leading to acute pain. Over time, these bleeds cause chronic arthritis, resulting in persistent pain and reduced mobility (Kumar et al., 2020).

Suresh, a 32-year-old software engineer from Bangalore with severe Haemophilia A, describes his experience: "The pain from a joint bleed is unlike anything else—it's sharp, throbbing, and can wake you from the deepest sleep. And the aftermath? Joints that never quite work the same again."

Mental and Emotional Trauma

Living with a chronic, unpredictable condition takes a significant toll on mental health. Studies indicate that people with haemophilia experience higher rates of anxiety and depression compared to the general population (von Mackensen et al., 2021).

The constant fear of bleeding episodes, concern about treatment access, and uncertainty about the future can lead to chronic stress. Children with haemophilia often develop anxiety around physical activities, leading to social isolation.

Economic Burden

The financial impact of haemophilia is staggering. Treatment costs for haemophilia are among the highest for any chronic condition:

• Factor replacement therapy can cost between ₹5-15 lakh annually for a child with severe haemophilia in India, depending on the weight and frequency of bleeds (Haemophilia Federation India [HFI], 2022).
• Inhibitor treatment can escalate costs to ₹50 lakh or more annually.
• Additional expenses include hospitalizations, physiotherapy, mobility aids, and potential surgeries.

Many families deplete their savings, take loans, or sell assets to afford treatment. Despite government schemes like Ayushman Bharat in India, coverage for haemophilia treatment remains inadequate (Ghosh & Ghosh, 2020).

Social Isolation

People with haemophilia often face social exclusion due to limited mobility, fear of injury during social activities, and misconceptions about the condition. Children may be excluded from sports and physical education, leading to feelings of alienation (Cassis et al., 2019).

Additionally, the genetic nature of haemophilia can lead to stigmatization of female carriers, affecting marriage prospects in conservative societies.

Professional Challenges

The workplace presents numerous challenges for individuals with haemophilia:

• Physical limitations may restrict career choices.
• Frequent absences due to bleeds or treatment affect career progression.
• Discrimination by employers who fear increased insurance costs or absenteeism.
• Difficulty in disclosing the condition due to fear of prejudice.

A survey conducted by the World Federation of Haemophilia found that 65% of adults with haemophilia reported that their condition had negatively impacted their career choices and progression (WFH, 2021).

 The Awareness Gap

Despite affecting millions worldwide, haemophilia remains poorly understood among the general public and even some healthcare professionals. This lack of awareness contributes significantly to the challenges faced by people with haemophilia:

• Delayed Diagnosis: Due to limited awareness, many cases go undiagnosed until a major bleeding episode occurs. In India, the average age of diagnosis for severe haemophilia is 4.4 years, compared to 0.8 years in developed countries (HFI, 2022).
• Misconceptions: Common myths include believing haemophilia is contagious or that any injury will result in fatal bleeding.
• Inadequate First Aid: Lack of knowledge about appropriate first aid for someone with haemophilia can lead to improper management of bleeds.
• Workplace Ignorance: Employers and colleagues often lack understanding about haemophilia, leading to inappropriate expectations or discrimination.

A study conducted across five major Indian cities found that only 22% of the general public could correctly identify haemophilia as a bleeding disorder, and less than 5% understood its genetic nature (Kar et al., 2021).

Why Ignorance is the Real Enemy
Globally, 75% of haemophilia cases remain undiagnosed or untreated (WFH, 2023). In India, only 20% of estimated patients are registered, condemning thousands to preventable disabilities (HFI, 2023). Workplace discrimination exacerbates their plight:

• Lack of awareness about reasonable accommodations under laws like India’s Rights of Persons with Disabilities Act (2016).
• Insufficient health insurance coverage for clotting factors.
• Stigma around frequent medical leaves.

How Society and Workplaces Can Help

Society and workplaces play crucial roles in supporting individuals with haemophilia:

Raising Awareness

• Educational Programs: Public education campaigns about haemophilia to reduce stigma and misconceptions.
• First Aid Training: Basic training on managing bleeding emergencies for teachers, employers, and community members.

Workplace Accommodations

• Flexible Work Arrangements: Options for remote work or flexible schedules during bleeding episodes.
• Ergonomic Workspaces: Proper seating and equipment to prevent joint stress.
• Inclusive Policies: Health insurance coverage for rare diseases and non-discrimination policies.

Support Systems

• Peer Support Groups: Connecting individuals with haemophilia to share experiences and coping strategies.
• Family Education: Resources for families learning to manage the condition.
• Psychological Support: Access to mental health services specialized in chronic illness management.

From the Hearts of Haemophilia Patients

Ravi, a 32-year-old engineer from Mumbai, shares: “My manager said, ‘You’re a liability.’ I hid my condition for years, until a joint bleed hospitalized me. Now, I’m unemployed.”

Deepak, a 28-year-old with severe Haemophilia B from Chennai, shares: "My day begins and ends with the needle. I've been injecting myself since I was 12. It's a strange relationship—I dislike the pain, but I know that needle gives me a chance at a normal life."

“Every bleed is a reminder of my condition, but it’s also a chance to educate others,” Alden says (Centres for Disease Control and Prevention, 2024).

My Own Reflection

Every disease is the absence of ease. People with any disease will often struggle with anxiety, depression and isolation. An identity crisis is the biggest problem with these people. And when the disease is rare and incurable, it adds more to the pathetic plights of the patients.

Haemophilia is one such rare genetic disease. I am a Severe Level Haemophilia patient. Due to extreme bleeding in joints, my right knee and left ankle are totally damaged, and my right shoulder is about to be fused. Due to this, I am 68% handicapped.

It is a very tricky disease. On the outside, everything looks normal, but inside there is a series of crisis. This disease not only damages physical health but also the mindsets of talented individuals who want to do something better with their lives. There is a constant pain issues, frequent needling for Factor Therapy and frequent loss of workplace schedule due to emergency medical attention.

Whenever injuries (internal or external) happen, we start feeling agitations and the movements of those body parts start degrading gradually. In this condition, the standard procedure is the take RICE therapy and then immediately rush to any Government Hospitals to take Factor 8 Injection. I do the same.

What is RICE Therapy?

R- Rest (we need to immobilise that part/ body so more bleeding can be prevented.

I-  Ice (If it is internal bleeding, immediately applying ice is a must to control the damage.)

C- Compression  (To decrease bleeding, that body part needs to be compressed very tightly with a grip bandage.

E- Elevation (If it is head/hands/ legs, it is necessary to elevate that part above the heart level to decrease the damage.

This is the standard procedure for every Haemophilia patient who suffers from any injuries. Unfortunately, there is a lack of awareness and sensitivity towards the process of treatments and medical practices. Due to this, immobilisation is considered as laziness; frequent rushing to get medical help is considered as running from the job early- in short, KAAM CHORI.

On this World Haemophilia Day, I request everyone who is connected with me and other such persons with disability that please, have support and empathy for those who are struggling silently.

Every day is the choice between living and dying. Suicidal thoughts are always around the corner. We need to take utmost care that we do not take any negative measures to end life. So to keep my mindset positive, I read self-help books. Till now, I have more than 900 books in my personal collection. They really help to motivate to decide positivity for the day. They really help me to create a better life despite severe malfunctions in my body.

Apart from books, society also played a very important role in the well-being of patients with Haemophilia. Strong social and emotional support leads to longevity of life; negative social and emotional torture leads to cutting life expectancy by half.

Every day, I have to remind myself that I must LIVE the Life; not to LEAVE the LIFE.

After observing widespread ignorance and negligence in awareness towards this disease, I am starting a Helpline, an Online Support System and a website dedicated to HOPE for those who are less fortunate. 

Work Begins from TODAY. DAY-1.

Conclusion

Living with haemophilia means existing in a delicate balance—life on the tip of a needle—where daily management, careful planning, and access to treatment make the difference between disability and opportunity.

On this World Haemophilia Day, let us commit to increasing awareness about this condition, supporting policies that ensure universal access to treatment, and creating inclusive environments where individuals with haemophilia can thrive.

For those living with haemophilia, the needle represents both vulnerability and resilience. It is a symbol of their daily struggle and their remarkable strength. By understanding their challenges and working collectively to address them, we can ensure that life on the tip of a needle becomes less precarious and more empowered.