Mental care for rare-disease Patients.

Brain Fitness Center Africa

Over 50million people in Africa live with rare diseases: This was published in a science direct article early 2024. 50M, that's 1 out of every 20, most of whom are not diagnosed or misdiagnosed.
over the years, intellectual and financial commitments have been mostly directed towards communicable and infectious diseases such as malaria and HIV/AIDS with little attention to rare and chronic diseases even though they constitute public health and developmental challenges.
According to NIH, HIV showed a national prevalence of 3.2% and received million dollar supports from global partners while hypertension was at 28.7% and was almost always ignored in Ghana 2017.

The hardest part about living with rare disease in Africa is that you have to do it alone mostly. The hospitals are not well equipped to diagnose and treat well, families and friends are not well informed about the challenges nor are they empathetic towards the patients, society makes it hard to even talk about the pain and patients are left to suck up the pain and suffer alone. Most patients also do not fully understand their illness yet they have to create their own coping mechanisms.

 Last year, our organization did a survey of women suffering from chronic illnesses in Accra, Ghana. A few of these illnesses were from birth like sickle cell anemia, a good number had developed due to life style, violence and abuse, environmental and climatic conditions. several woman at a rather young age had high blood pressure from underlying conditions. We talked with 100 women and their biggest challenge resulted to this: Their mental state was making it difficult to navigate their situation and they all wished at least one person could understand what they are going through.

We therefore concluded that, there is a big mental need to be met in the rare disease and chronic illness space. From healthcare centers or personnel as treatment centers, families/friends as care givers and support system and communities at large to the patients in particular, all need to be equipped with mental care tools for the rare community.

Brain Fitness Center Africa created a project to provide mental care tools to people and communities engaged in rare disease activities. We hope to reduce stigma, increase empathy, improve active engagement in mental health activities within our communities.

mindful/holistic healing is one of the main things we focus on. we believe that the brain is able to heal and rebuild cells. We therefore train people living with rare diseases and those recovering from chronic illness to manage their health using advances from neuroplasticity and neurogenesis together with coaching principles.

Holotropic breathe works: When the body is excessively stressed, it is likely to result in chemical imbalance that can cause further symptoms including mental illnesses. We use specific and targeted types of breathe-works in our trainings to help people produce good (happy) chemicals which will intend help the body to heal.

Yoga and meditation: we are all aware that body fitness is also important. However, when people are sick, they can hardly bring themselves to exercise because it seems hard. Yoga can be gentle, yet do as much good as cardio. Usually, Africans view Yoga and meditation practices as some negative spiritual practice and scare away from it. So depending on the group we are working with, we intentionally align it with their own religion but mostly emphasize on the mental and physical benefits.

Community engagement: We do have a large community in Africa currently picking up mental health activities. We organize workshops and masterclasses for other organizations to learn practical skills to help their communities better. one of the most requested workshop has been workforce productivity and mental health first Aid at school and work. We also equip religious leaders with these trainings since the religious space is really big and very influential in Africa. We want to normalize seeking your spiritual journey but also being intentional about your mental state. We have worked with hospitals closely for them to consider setting up systems that provide mental care for rare and chronic illness patience during hospitalization and after.

we have created different programs for different groups of people in different environments and all are centered around building mental toughness and resilience skills to help them overcome their personal or community challenges. We use success stories of others who have overcome physical and mental challenges and also of those who may have an in curable disease but are finding their new normal and living victoriously regardless.

People living with specific rare diseases; Our organization was founded following a gut health interest. We are particular about patients living with and/or afflicted by short bowel syndrome, Intestinal TB, inflammatory bowel disease, colon and rectum injury, Mal-absorbtion, celiac disease etc. We create awareness and educate their families about the help and support these patients need. we equip the patients with mental toughness skills to manage pain and improve their health. We also advocate for the government to subsidize for diagnosis and treatments of these rare diseases. We sometimes organize fund raising for high risk patients.

Women and girls who have developed chronic illnesses due to violence and abuse. Some cultural beliefs and traditional practices in Africa are the root causes of trauma for girls which later on becomes the underlying cause for chronic illnesses. They are quite a good number of projects in Ghana that work with women and girls who are victims of violence but very little is done concerning chronic illnesses or mental illnesses developed from this. For those who are still living in these toxic environments, we find ways to physically move them from their abusers. We connect with some lawyers and organizations based in justice support to link the patients for legal assistance. We also organize wellness programs and safe space/meetings for these women to support each other. We help those that have no income to build career path plans in order to start businesses or find Jobs.

Anti bullying against children living with rare diseases: We have a school program that focuses on mental fitness for education. On our agenda is an awareness and anti bullying sector. We help the young kids who are living with rare diseases know they have rights to education and to fun living and all other extracurricular activities if they want to participate and we teach the other kids to be empathetic and to offer help and support when need be. We also train staff to create a good learning environment for them. We have attended a few teacher/parent conferences to also help these guides avoid subconsciously bullying the children and also how to help them navigate life better.

community awareness: We create programs to inform the public about rare diseases and what they can do o help if they know anyone in that situation. Most African communities tend to think of people with rare diseases as "witches and wizards" and hence treat them poorly. Brain fitness Center works with quarter heads, fons and chiefs and other kinds of community leaders to educate their communities and build stronger support systems.

Early this year, we launched a 'mental health first aid hotline' and visited university campuses and some other high risk areas to create awareness. so far we receive an average of 80 callers monthly.

In 2023, we Carried out a survey of women living with Chronic illnesses in Accra. We then went further to provide mental care for 3 of these women and did a general workshop with the community at large to sensitize them on our work. We talked about the hotline which was yet to be launched as a means to get some help as well.

2022 to 2023, we organized a sports and games activity with schools in partnership with 2 other organizations. we had 8 schools participate with over 1000 students directly involved in the games and approximately 6000 reached through workshops and sensitization activities. Our main objective with this program was to use sports and games to show inclusion for people with disability but zooming in on those 'disabilities you don't see'; chronic and rare diseases that may not be so obvious. We talked empathy and support for peers who need it and also had sessions with teachers discourage discrimination.

Over the last decade, many organizations have taken up interest in mental health activities but most of them have been centered around awareness and sensitization. Also, they are very few organizations doing mental work with the rare community. The few mostly provide assess to drugs and other medical resources. Our organization provides what is lacking in both the mental health and rare disease communities. We go beyond sensitization, to actively equipping our target population with the skills so they can manage themselves. We used advances from cognitive neuroscience and life coaching practices to create our unique modules.

In a new program we call 'AI and Brain science', we are using tech tools to show people their brain activities for the first time especially during our school programs. We are using Muse and Neurosky brain waves to help people meditate better. we have partnered with one of the rapidly growing tech firm in Ghana called 'IOT NETWORK' headed by Joshua Agyemang to better create useful tools for our future work.

Knowing our training modules are unique and they work, we want them to
reach as many people as possible. so we are organizing master classes with new psychology graduates, pedagogic teachers from schools, school and work
counselors and other related fields to equip them with the knowledge to improve their skills and better impact their communities.

After I left the hospital, i found several support groups online which were all locally based out of Africa. I got to learn that many of the rare diseases are classified for social welfare benefit and there is a system that supports them. We do not have such a system in Ghana nor Cameroon. Some of the patients we meet could really use financial assistance. The organization it self needs funds to run its activities. Given that our solution is new and that the problem is not generally given enough attention yet, our work is yet to gain traction from government and funding organizations.

We have to train team members on our unique modules and also our tech. Its quite a challenging area as we have to purchase more of the tech tools to be able to train a good number of people.

We will also like to get experts from other regions and related fields to share their knowledge and help us upgrade our services.

We keep experiencing traditional and religion barriers. We do our best to show that we are not trying to interfere with religious belief systems and cultural beliefs but since mental skills are a new topic to most people, we keep getting some resistance in those areas. We therefore have to do a lot of community awareness and sensitization to reduce these barriers.

I live with short bowel syndrome. in 2016, i was diagnosed with intestinal obstruction/failure (after several misdiagnosis) and underwent 3 major surgeries. i had contracted intestinal TB while in the hospital due to mismanagement, and during one of the surgeries, my ileum was completely extracted as my small intestines were perforated. Part of the Jejunum was also cut off after which i was said to have short bowel syndrome. The challenges from misdiagnosis to carelessness to unavailability of drugs (precisely TPN in my case; we searched the whole country and couldn't find it) to zero mental preparation for the new changes and so much more, have been my education. With my background in Mental Coaching, i was able to develop a coping mechanism and practice mindful healing but it has indeed been a tough Journey. I can serve this group because i am 'them'.

There are 4 other people on our team, 2 are volunteers who have experienced some chronic trauma as well. One lady has a child who is disabled and has lost 2 children at birth. the doctors say there is a genetic problem but it is not diagnosed. One volunteer was diagnosed of bipolar disorder but struggles to get help. And they are several others who have worked with us who may have a family member living with a rare disease or they may just be interested in the field. it is safe to say my team understands the people we are meeting and because we have all been able to pick up our lives regardless and are not only surviving but thriving, we believe we are best suited to do this job.

We have also identified other organizations doing similar work and we partner up for most activities. This way we can reach more people with our diverse solutions.

We get community heads included in our policy decision meetings. They help us understand the people better and clear some barrier issues. some cultural, religious, traditional differences could affect our work. therefore, we learn about the communities from their leaders in our meetings and then design our programs in a respective way. For instance, most christian communities in Africa will have a problem with the term 'yoga', Therefore, we have to name our exercises in a way that is acceptable.

In 2025, we will partner with health organizations to provide scarce and expensive drugs for children living with rare diseases and financial and mental support for them and their care takers. We intend to reach 50 children next year and every year after that, increase the target by an addition of the initial number until we can help 250 children in the 5th year taking us to a total of 750 children over the space of 5 years.

We will also expand on our mental care for women living with rare diseases or chronic illness. Last year, we focused only on Accra Ghana. we plan to go further to 7 other local regions and also 2 regions in Cameroon, first to expand on our research on rare and chronic illnesses arising as an effect of violence and abuse and climate change. Then, we will select high risk cases for mental care and financial support.

We are currently working on more partnerships with tech firms as we hope to start developing our own tech tools towards brain health and illnesses that affect the brain. We also want to use AI to create solutions to some of the rare and chronic diseases in our communities especially around gut health. This is a 5 year plan.

in the next year, we will start building a network of mental care professionals who can be assigned to assist patients at the comfort of their homes. This is a big step and it may take up to 5 years to become effective as it will require legal procedures, expert trainings and some standards evaluation. Our plan is to convince the government to align and invest resources towards this important step.

in 5 years, We hope to also build a destination for wellness where people can come focus on their healing mentally. Patients mostly need to escape toxic environment to a place where they can mindfully rest and recharge. Our center will provide both therapy and care needed by the patients.

Our research programs will produce evident data to get the government and other organizations interested and involved in the rare disease and chronic illness community.

Our mental care programs will help rare patients be in a better mind space to heal or manage their health and also get medical help.

NIH shared a paper by BMC Health Serv Res in 2022 highlighting the effect of mental care for rare disease patients in the UK. Although we have different environmental factors between the UK and Africa, most mental needs are similar across the world and their study concluded that mental healthcare should be integrated into treatment for rare diseases. And that is where our organization comes in.

5 full time staff, 8 part time staff, 3 volunteers and (18 specific programs volunteers from last year)

3 years

Firstly, the Founder is Cameroonian and the co founder is Ghanaian. We have taken on more women than men but only because we are intentional about giving women more opportunities.

Brain fitness center Africa makes it a duty to give opportunities to marginalized groups like people with disabilities, people living with rare and chronic illnesses, Albinos, people from places and tribes that are secluded etc.

Our programs are designed and offered to all groups of people without discrimination on their cultural, traditional or religious backgrounds.

 We build meaningful relationships and partnerships with other people and organizations doing similar work as Brain fitness center Africa. Collaboration to us, is more important than competition.

We train our staff to be open and willing to learn from other cultures and traditions. Team work with a diverse group is more likely to collect different ideas and better innovate the future.

Our main beneficiaries include; families, schools, churches, social women groups and health organizations.

Value proposition: Mental care for rare disease patients, Mindful healing, support system, financial Aid, mental tools for professionals.

Benefits provided: Be part of a community that understands the same challenges you have and share solutions together; Get financial,technical and social assistance, Be informed about updates and opportunities in the rare and mental health community, become part of the innovating team.

Channels: Home services, professional sessions at offices, online chats, call center, community rallies, referrals.

Impact: See evident improvement on your mental and overall health; Get reorganized and walk your career path with confidence; Find a balance in your work and family life; Build resilience and Excel regardless of the condition.

We are going to use a combination of sustained donations and grant and also selling services to selected businesses and corporate organizations. 

Early this year, we received a collaboration and sustained funding for our mental health first aid Ghana project for CONTRIBYOUTE  Germany. They support the project with a monthly donation. They have donated from February till now and have committed to do so for the whole year. 

I, the CEO of BFC Africa is also an author and the book titled 'Bed27; mental strength and healing' which is the true life story of how i survived intestinal TB/ obstruction and failure is currently on sale and making some profits all of which is dedicated to sustaining the organization.

We also started proposing our mental trainings to businesses to build mental toughness culture at work. Our programs can help employees maximize their potential and improve their performance. We intend to get use the proceeds from this service to fund some of our projects.

In the future, we will propose our mental care services to the general public and hopefully get clients who can pay. All these together with grants and donations that we intend to keep applying for will be the means we use to sustain this good work.