By Sola Ogundipe

She was born with a congenital heart defect, an Atrial Septal Defect, ASD, commonly known as a “hole in the heart” that progressed into pulmonary hypertension (PH, a silent, rare lung disease that affects the blood vessels in the lungs.

Ever since Ayotunde Omitogun has been engaged in a silent battle with the invisible disease, the battle inspired her to create a lifeline for others. Determined to turn her adversity into advocacy, Ayotunde has channelled her health challenges into a passionate advocacy for better care and awareness of the disease in Nigeria. She founded the Cardiac Community Advocacy Support Initiative, an organisation dedicated to raising awareness about PH and providing support to patients and their families.

As the Founder/Executive Director of the outfit, Ayotunde is wholly and completely engaged in the battle against the deadly disorder.

“Pulmonary hypertension is a silent killer. Many people don’t know they have it until it’s too late. That’s why awareness is crucial,” she told Good Health Weekly in an encounter.

The Cardiac Community’s initiatives include the “You sabi PH?” campaign, which aims to educate the public about the symptoms, causes, and treatment options for PH. The organization is also launching a new initiative called “PH Drug Aid,” which will provide financial assistance to patients struggling to afford life-saving medications for the disorder.

Despite her crusade, Ayotunde is worried that in Nigeria, significant advancements in PH treatment are missing and access to crucial medications remains a major challenge. Many patients are unable to afford the high cost of treatment, which can lead to severe health complications and even death.

“We’re working hard to make these life-saving medications more accessible and affordable. We believe that everyone, regardless of their socioeconomic status, should have the opportunity to live a healthy life,” she noted.

Through her unwavering dedication and passion, Ayotunde and the Cardiac Community are making a significant impact on the lives of people living with pulmonary hypertension in Nigeria. By raising awareness, providing support and advocating for better access to care, they are empowering patients and giving them hope for the future.

Ayotunde speaks further: “The Cardiac Community is a Non-Governmental Organization dedicated to combating heart disease in Nigeria. We are actively engaged in the fight against heart disease by promoting health awareness through online platforms, public outreach programmes, and campaigns. “Additionally, we offer crucial psychological and emotional support through our groups, as well as financial assistance through fundraising for patients who are unable to afford healthcare services.

“One of our organisation’s primary focus areas is pulmonary hypertension, a chronic condition that affects the heart and lungs. It is characterised by elevated blood pressure in the arteries in the lungs. ” often-misunderstood disease places a significant burden on the heart, which can eventually lead to heart failure. Pulmonary hypertension is frequently misdiagnosed as other respiratory and cardiovascular conditions, making awareness paramount for early detection and improved care.”

She explains that currently. pulmonary hypertension has no known cure, but treatments can help slow the disease’s progression and improve the quality of life for those living with it.

“We have a programme called You sabi PH? and we’re coming up with a new initiative called Drug PH. Unfortunately, it doesn’t have a cure, but this treatment system helps with reducing the progression; it also helps with increasing quality of life. There are some drugs specifically for PH; unfortunately, we still have very, very limited treatment in Nigeria.

“These medicines are not still very accessible and affordable, even the generic versions, and when you have PH, without your drugs, you can’t do anything; you’re not able to work or make money, so how do you even afford to get these drugs?

“Sadly, there are limited treatment options in Nigeria, and even these can be out of reach for many who need them. That’s why we created the PH Drug Aid-to support Nigerians who cannot afford essential medications.

“November is Pulmonary Hypertension Awareness Month, and this year’s theme is ‘Let Your Light Shine’. Our goal this month is to empower Nigerians living with pulmonary hypertension by providing them with life-saving medications they may otherwise go without.

 Further, she explained: “Pulmonary hypertension is a rare disease that affects the lungs and the heart, and it’s different from the commonly known hypertension that is just basically high blood pressure. This one is high blood pressure in the arteries connecting the heart to the lungs called the pulmonary artery. “Untreated, this disorder is potentially fatal. It can have so many causes, mine was a congenital heart defect and there are so many others. In Nigeria, we’re the only organization, raising awareness and sharing a spotlight on this disease. So we want to raise awareness, advocate for more treatment, and also support people to get the available treatment in Nigeria, people who can’t get this treatment.

“Unfortunately, we don’t have data for Pulmonary Hypertension in Nigeria is mostly not diagnosed or misdiagnosed. For me, the reason why it was caught early was because I had a congenital heart disease, but if you don’t have heart disease, you might not go to the hospital.

“You might have asthma or tuberculosis, yet you might not be diagnosed in time, until in the advanced stage, you might not even be diagnosed at all because you might not know that this is pulmonary hypertension.

“So, for people that have associated diseases, autoimmune diseases, it’s always good for you to check. Talk to your doctor. It’s better to catch it on time before it gets to the advanced stage. Start treatment on time. When you treat it on time, it doesn’t progress as quickly as when it’s caught at the advanced level.

“The problem with hypertension is that if it’s not treated, it can lead to heart failure, and that can kill. So it is potentially fatal. And if you don’t treat yourself, you can have a stroke, heart failure, kidney disease, or you can be diabetic. Sometimes even treatment doesn’t work and someone may develop heart failure and lung failure because the disease affects the heart and the lungs. So they might need a lung and heart transplant.

“I’m emphasizing so much on management because although it is incurable; it can be managed. I have seen those who lived with pulmonary hypertension for 20 years; I’ve lived with it for 11 years. I was diagnosed 11 years ago, but people are different. No two patients are the same.

“Some might survive it, others might not; it’s a deadly disease, and because you might not anticipate how serious it is by just looking at the person who has it, you might not know that somebody has suffered heart or lung failure.

Hence it is an invisible disease yet quite deadly and  that is why we’re emphasizing early diagnosis and treatment.

“If you can diagnose it early, then you can start treating yourself. This is why I’m speaking out. Without advocacy, we cannot get better treatment; we cannot get a better diagnosis. Nobody would even know we are here; nobody would know what we are going through. Nobody would even know that pulmonary hypertension exists in Nigeria.

“So we’re encouraging people living with this disease to come out and advocate and raise awareness and let people know these things and seek a better deal for the community.”