Every year, since 2012, the World Pulmonary Hypertension Day (WPHD) is celebrated on the 5th of May. Ayotunde Omitogun, a patient advocate of pulmonary hypertension (PH), convenes the walk4PH annually to create awareness about the disease . Following this year’s walk4PH campaign to commemorate the 2022 WPHD, She tells MM correspondent – Durodola Ayomide – about cardiac community and what it is like to live with pulmonary hypertension.
MM: Kindly, introduce yourself to us.
Ayotunde Omitogun: My name is Ayotunde Omitogun, I am a Pulmonary Hypertension and Rare Disease patient advocate. I am the co-founder of Cardiac Community and convener of Walk4PH.
Part I – Understanding Pulmonary Hypertension (PH)
MM: What is Pulmonary Hypertension?
Ayotunde Omitogun: Pulmonary hypertension is a general term used to describe high blood pressure in the lungs, it is different from the regular hypertension also known as systemic blood pressure. In regular hypertension, the arteries throughout the body are constricted. In pulmonary hypertension, the pulmonary arteries, which are the blood vessels responsible for transporting blood from the heart to the lungs are affected. Pulmonary hypertension is a rare chronic disease in which the pulmonary arteries become narrowed and thickened, making it difficult for blood to flow through and as a result causing the heart to work harder. Over time, the hearts become enlarged, weakens and it can lead to the development of right heart failure.
MM: Interesting. When were you diagnosed of PH?
Ayotunde Omitogun: Over 8 years ago at LUTH.
Part II – Cardiac community
MM: Cardiac community has been doing a great job with advocacy as regards heart-related diseases and PH. Can you give us a brief history of the organisation?
Ayotunde Omitogun: Thank you. Cardiac Community was founded in 2018, shortly after being diagnosed with Pulmonary Hypertension; a rare deadly disease that affects the lungs and heart. My condition emanated as a result of an untreated congenital heart defect. After which I founded Cardiac Community to raise the necessary awareness about pulmonary hypertension and other cardiovascular diseases in Nigeria, also to provide support to people living with such conditions.
Heart disease is the number one killer and cause of disability worldwide, and 80 percent of heart disease related deaths happen in developing nations. Our goal is to change the narrative around heart diseases in Nigeria.
MM: As an organisation, what challenges have you faced? Have you ever regretted starting the NGO?
Ayotunde Omitogun: I don’t regret starting the organization. I absolutely love raising awareness for pulmonary hypertension because I know how important it is. However, some major challenges we have faced so far are funding, lack of interest, and lack of priority for Non-communicable diseases and rare diseases in Nigeria.
MM: The first time I heard about PH was earlier this year and a whole lot of people out there are ignorant of this disease. What measures is Cardiac community putting in place to ensure that more people get to know about PH?
Ayotunde Omitogun: PH is still largely unknown in Nigeria, and that’s why we created the “You Sabi PH?” Campaign and “Walk4PH ‘initiative. Also, because we know there is a general lack of interest in rare diseases in Nigeria, we decided to make the “You Sabi PH?” campaign in pidgin. So, it is catchy, more relatable and understandable.
MM: I must commend your efforts, because it takes grit and determination to do what you’re doing. Where do you see cardiac community in the next five years?
Ayotunde Omitogun: In the next five years, we hope to be at the fore-front of peer-to-peer support, advocacy and awareness group for cardiovascular diseases in Nigeria.
Part III – Living with pulmonary hypertension in Nigeria
MM: Can you share a bit of your experience as a PH patient living in Nigeria.
Ayotunde Omitogun: Hmmm, living with pulmonary hypertension in Nigeria is hard. Apart from the major challenge of lack of treatment options, social challenges such as isolation, takes a huge toll on one’s mental health. Living with PH, especially in Nigeria can be very isolating. This can be attributed to the lack of adequate information and knowledge of the disease. It is rare, so you don’t see a lot of people living with the disease and you can easily feel alone, get depressed and anxious.
Then there is also the stigma that comes with living with an invisible illness such as PH. People tend to judge one by the way they look, and this often leads to lack of empathy even on the side of health practitioners. I have been called “lazy” so many times, and a lot of my symptoms have been dismissed because they can’t be seen. I’m seen as an attention seeker a lot of times.
MM: As a patient advocate of PH, what constraints do you think people living with pulmonary hypertension in this part of the world are facing?
Ayotunde Omitogun: Some of the constraints people living with PH in Nigeria are facing include: Getting timely and accurate diagnosis; Getting medications and proper treatments options; Getting mental health help for depression and anxiety.
MM: Do you think the Nigerian healthcare system is doing enough to ensure that PH patients are treated adequately?
Ayotunde Omitogun: No, I don’t think so. We have a lack of PH specialists in Nigeria who can properly treat and manage this condition.
MM: If given the opportunity to pass a bill in the healthcare system regarding PH, what would the bill be?
Ayotunde Omitogun: The bill I would pass, will ensure there are more treatment options available for PH patients. I also would make sure, we have proper universal health coverage that will enable people living with PH have access to these treatment.
Part IV – walk4PH
MM: Tell us about walk4PH.
Ayotunde Omitogun: Walk4PH is a walk-a-thon aimed at raising awareness about Pulmonary Hypertension; a chronic disease associated with high blood pressure in the lungs. Pulmonary hypertension causes the heart to overwork, which can eventually lead to heart failure. This disease has no known cure and it is usually confused and misdiagnosed as asthma and other heart and lung diseases.
Pulmonary Hypertension is largely unknown in Nigeria and we want to bring the necessary awareness and shine a light on this deadly disease. We believe with awareness, we can get quicker and more accurate diagnosis and better treatment options in Nigeria. This initiative aims to create the necessary awareness about this deadly disease in Nigeria and commemorate World Pulmonary Hypertension Day.
