Frontiers for Hemophilia and Bleeding Disorder Sierra Leone

FRONTIERS FOR HEMOPHILIA AND BLEEDING DISORDER SIERRA LEONE

The problem of women bleeding diseases in Sierra Leone is a significant public health issue that affects the lives of many women and girls in the country. Women with bleeding disorders, such as hemophilia and Von Willebrand disease, face numerous challenges in accessing diagnosis and treatment, which can lead to poor outcomes and reduced quality of life.

 In Sierra Leone, the healthcare system is still recovering from the devastating effects of the Ebola crisis, which has left a significant shortage of trained healthcare providers, particularly in rural areas. This shortage has led to a lack of access to medical facilities and trained healthcare providers for women with bleeding disorders, making it difficult for them to receive timely and adequate diagnosis and treatment.

But more importantly, there is a significant stigma surrounding women with bleeding disorders in Sierra Leone, which has made it difficult for them to seek medical attention and disclose their condition to others. Women with bleeding disorders are often viewed as weak or fragile, and their condition is seen as a source of shame. This stigma can lead to social isolation, reduced self-esteem, and increased psychological distress.

The stigma surrounding women with bleeding disorders is perpetuated by cultural beliefs and societal norms that view these conditions as a personal failure or a curse from God. Women with bleeding disorders are often viewed as unable to fulfill their traditional roles as caregivers and breadwinners, which can lead to feelings of shame and guilt.

In addition, traditional healing practices are often used to treat bleeding disorders, rather than seeking medical attention. This can lead to delayed or missed diagnoses, inadequate treatment, and poor outcomes. Women with bleeding disorders may also be forced to rely on unproven treatments, such as herbal remedies or spiritual healing, which can further exacerbate their condition.

The consequences of poor diagnosis and treatment for women with bleeding disorders are severe. They may experience uncontrolled bleeding, joint damage, reduced mobility and independence, increased risk of mortality, and emotional distress. These consequences can have a significant impact on their quality of life, relationships, and overall well-being.

To address the problem of women bleeder in Sierra Leone, it is essential to develop a comprehensive approach that includes increasing awareness and education about bleeding disorders, strengthening healthcare infrastructure, increasing access to clotting factors, and providing gender-specific support services.

Increasing awareness and education about bleeding disorders can help to reduce stigma and promote understanding and acceptance. Strengthening healthcare infrastructure can improve access to medical facilities and trained healthcare providers. Increasing access to clotting factors can help to provide timely and adequate treatment for women with bleeding disorders. Finally, providing gender-specific support services can help to address the unique needs and challenges faced by women with bleeding disorders.

As part of our solution, we will initiate Education and awareness raising program to educate women with bleeding disorders and their families, in each community, about their symptoms, and the importance of seeking medical attention. A support group will be formed to create a safe spaces for women with bleeding disorders to share their experiences, receive emotional support, and access resources and information.

A training for community health workers related to women with bleeding disorders will be  facilitated to provide basic care and first aid. Establish unite within the already Established treatment centers in rural areas, to provide easy access and specialized care. Empower women bleeders and families to form strong Advocacy team for the rights and dignity of women with bleeding disorders, promoting acceptance and general understanding of bleeding diseases.

Finally, we will conducting research to better understand the experiences and needs of women with bleeding disorders in order to formulate a more lasting solution.

The targeted population is made up of approximately 25 thousand women and girls with bleeding disorders, such as, hemophilia, Von Willebrand disease, and other bleeding diseases, in rural and urban areas of Sierra Leone with varied social and economic background.

The solutions proposed will have a significant impact on the lives of women with bleeding disorders in Sierra Leone as follows:

Education and Awareness Raising Program:  Increased awareness and understanding of bleeding disorders among women and their families. Improved diagnosis and treatment-seeking behaviors. Reduced stigma and social isolation. Empowered women with bleeding disorders to take control of their health and well-being.

Support Group:

Created a safe space for women and girls with bleeding disorders to share their experiences, receive emotional support, and access resources and information. Reduced feelings of isolation and loneliness. Improved mental health and well-being. Enhanced social support networks.

Training for Community Health Workers:

Improved basic care and first aid for women with bleeding disorders. Increased access to medical attention and treatment. Reduced morbidity and mortality due to delayed or inadequate treatment. Community-Based

Treatment Centers: 

Easy access to specialized care and treatment for women with bleeding disorders. Improved health outcomes and quality of life. Reduced hospitalization rates and travel costs for women with bleeding disorders.

Empowerment of Women Bleeders and Families: 

Creation of a strong advocacy team for the rights and dignity of women with bleeding disorders. Promotion of acceptance and general understanding of bleeding diseases. Increased voice and influence in policy-making and decision-making processes.

Research:

Better understanding of the experiences and needs of women with bleeding disorders. Development of targeted solutions to address specific needs and challenges. Improved health outcomes and quality of life for women with bleeding disorders.

As a non-profit patient organization, legally registered and work closely with the ministry of health, we have setup the only hemophilia testing center at Connaught Hospital and trained 4 medical personal in south Africa to conduct diagnosis and and treatment. we have diagnosed 21 hemophilia patients in Freetown and it surroundings who are now receiving ongoing treatment from in our center. we are working to expand our operations (awareness raising, diagnosis and treatment) to the Rural communities of Sierra Leone.

we partner with Donor agencies like:

Norvo Nodisk Hemophilia foundation (NNHF) they supported us with materials for awareness raising campaign, training of medical personals and to set up the first hemophilia diagnostic lab in the country. 

World Federation of Hemophilia (WFH) provide us with medication

As the only bleeding disorder patients organization in Sierra Leone, this solution has the potential to contribute to the overall healthcare in the country in several ways:

1. Specialization and expertise: By providing specialized care and treatment for bleeding disorders, the solution can attract patients from all over the country, thereby increasing the overall capacity of the healthcare system to manage complex cases.
2. Improved health outcomes: By providing timely and effective treatment, the solution can improve the health outcomes of patients with bleeding disorders, which can lead to a reduction in morbidity and mortality rates.
3. Reducing burden on general hospitals: By establishing community-based treatment centers, this solution can reduce the burden on general hospitals, which can then focus on other health priorities.
4. Capacity building: Through training for community health workers, our solution can build capacity within the healthcare system, enabling them to manage bleeding disorders more effectively.
5. Integration with existing healthcare systems: By working with existing healthcare systems, the solution can help to integrate bleeding disorder care into the broader healthcare landscape, ensuring that patients receive comprehensive care.
6. Data collection and research: As the only bleeding disorder solution in the country, it can collect data on bleeding disorders, which can inform policy decisions and research initiatives, ultimately contributing to improved healthcare outcomes.
7. Promoting primary care: By providing education and awareness about bleeding disorders, the solution can promote primary care and encourage patients to seek medical attention early, thereby reducing the risk of complications and improving overall health outcomes.
8. Reducing healthcare costs: By providing timely and effective treatment, the solution can reduce healthcare costs associated with delayed diagnosis and inadequate treatment.

By addressing these contributions, the bleeding disorder solution can play a vital role in improving the overall healthcare in Sierra Leone, particularly for women with bleeding disorders.

Winning the Prize will promote healthcare in Sierra Leone, here are some specific financial, technical, legal, and cultural benefits you may expect:

Financial Benefits:

1. Grant Award: A significant grant of $100,000 to support the implementation of your project to promote hemophilia care in Sierra Leone.
2. Fund for Capacity Building: Additional funds for capacity building and training for healthcare professionals, patients, and caregivers.
3. Cost of Equipment and Supplies: Funding for the procurement of necessary equipment and supplies, such as factor VIII and IX concentrates, to support hemophilia care.
4. Travel and Accommodation: Reimbursement for travel and accommodation expenses for project team members, experts, and healthcare professionals.

Technical Benefits:

1. Expertise and Mentorship: Access to experienced professionals and mentors who can provide guidance on project implementation, management, and evaluation.
2. Technical Assistance: Expert advice and support from recognized organizations in the field of hemophilia care.
3. Project Planning and Monitoring: Ongoing monitoring and evaluation of project progress, ensuring timely completion of objectives.

Legal Benefits:

1. Project Agreement: A legally binding agreement outlining the scope of work, responsibilities, and expectations for both parties.
2. Intellectual Property Protection: Protection of your intellectual property rights related to the project's innovative approaches or methods.
3. Compliance with Regulations: Compliance with relevant laws and regulations in Sierra Leone, ensuring that your project is implemented in accordance with national standards.

Cultural Benefits:

1. Increased Awareness: Promotion of hemophilia care through public awareness campaigns, social media engagement, and community outreach programs.
2. Community Engagement: Collaboration with local communities, patient organizations, and healthcare providers to ensure that the project is responsive to local needs and priorities.
3. Stigma Reduction: Efforts to reduce stigma associated with hemophilia by promoting education, acceptance, and inclusion.

By winning the Amgem Prize, our organization will have a unique opportunity to make a significant impact on the lives of individuals with bleeding disorder in Sierra Leone, while also benefiting from the expertise, resources, and support provided by the prize.

I'd like to highlight the strengths and qualifications that make Frontiers for Hemophilia and Bleeding Disorders Sierra Leone (FHBDSL) the ideal organization to design and deliver the solution to the bleeding disorder community in Sierra Leone. Here are some key points:

1. Local expertise: FHBDSL is the first and only bleeding disorder organization in Sierra Leone, with local knowledge and understanding of the country's healthcare system, cultural context, and community needs.
2. Trained staff: FHBDSL has received training in South Africa, which demonstrates their commitment to capacity building and adherence to international standards. This expertise will ensure that the solution is designed and implemented with a high level of technical proficiency.
3. Awareness and outreach: FHBDSL has experience in raising awareness about hemophilia and other bleeding disorders, which is crucial for increasing diagnosis rates and improving treatment outcomes. Their outreach efforts will help identify and engage with the target population.
4. Treatment and management: FHBDSL has already established itself as a provider of treatment and management services for patients with hemophilia and other bleeding disorders. This existing infrastructure will enable them to scale up their services to meet the needs of the target population.
5. Collaboration and partnership: FHBDSL's collaboration with the Ministry of Health, Connaught Hospital, NNHF, WFH, and other stakeholders demonstrates their commitment to working together with local organizations and international partners. This partnership will ensure that the solution is designed with a comprehensive understanding of the local context and international best practices.
6. Comprehensive services: FHBDSL's comprehensive services, including diagnosis, treatment, and management of bleeding disorders, will enable them to address the complex needs of patients with hemophilia and other bleeding disorders.
7. Scalability: With their existing infrastructure and expertise, FHBDSL has the potential to scale up their services to reach a larger number of patients with hemophilia and other bleeding disorders in Sierra Leone.
8. Sustainability: By partnering with local organizations and stakeholders, FHBDSL can ensure that the solution is sustainable in the long term, with a focus on building capacity within the local healthcare system.

In conclusion, Frontiers for Hemophilia and Bleeding Disorders Sierra Leone (FHBDSL) is well-positioned to design and deliver a solution to the bleeding disorder community in Sierra Leone due to their local expertise, trained staff, awareness-raising efforts, treatment and management services, collaboration with local organizations, scalability, sustainability, and comprehensive services