Eighteen-year-old Ogungbayi Lydia tells TEMITOPE ADETUNJI about her fight to stay alive. Born with sickle cell, she is now battling a rare heart condition that has left her stomach painfully swollen….CONTINUE FULL READING>>>>>
Can you share the story of how your health journey began?
I am 18 years old. I am from Badagry, Lagos State. I was diagnosed with massive ascites about four years ago, a severe condition where an abnormal amount of fluid builds up in the abdomen, causing swelling, discomfort, and difficulty in daily life.
For years, I lived with the uncertainty of not knowing the exact cause. Recently, doctors confirmed that it is actually Progressive massive ascites caused by constrictive pericarditis — a rare but serious condition where the sac surrounding the heart becomes thickened and rigid, preventing the heart from functioning properly, according to my understanding.
It all started in March 2021. My stomach began swelling gradually. I thought it was something minor, but gradually, my stomach began to swell very fast. It kept getting bigger and more uncomfortable. We went from one hospital to another, and eventually I was referred to Lagos State University Teaching Hospital.
Since then, my life has completely changed. My days are filled with hospital visits, tests, and treatments. Sometimes the swelling reduces a little, but it always comes back, and each time, it feels worse.
What position are you in your family?
I am the third child in my family. I have two older brothers and a younger sister who came after me.
What was your life like before you fell ill?
Before I fell ill, my life was so different even though I was suffering from the sickle cell anemia crisis, it comes once in a while. I was a student in the Science Department in a secondary school, full of excitement and plans for the future. I loved science — it fascinated me.
I wanted to understand the human body, especially because of my own experience living with sickle cell. That is why I had a dream: to become a hematologist. I wanted to help people like me, people who knew what it was like to live with constant health challenges, yet still dared to dream.
Being born with sickle cell has been a serious struggle; Sickle cell crises are already painful and draining. But when this stomach swelling began, everything became worse. My body became weaker, my recovery slower, and the pain is harder to bear. Every procedure feels draining.
How has this illness affected you emotionally?
It has been very hard for me — sometimes too hard to explain. There are days I just sit quietly and ask myself, ‘Why me?’ I think about why I have to go through all this pain when none of my brothers or sisters is facing it.
What do your parents do for a living?
My dad is a pastor, and my mum is a petty trader. They have both been doing everything they can to keep me alive. I know it has not been easy for them. My dad prays for me, my mum works so hard, selling whatever she can, even when she is tired, just to make sure I have my medicine, food, and the care I need.
There are times I see the worry on her face, even when she tries to hide it from me. I know they carry a heavy burden in their hearts
How long have you been in and out of the hospital for this?
I have been in and out of the hospital since 2021. Specifically, at LASUTH, my first major admission was in late June 2023. I was there for over 22 days. They inserted a central line into my stomach to drain the fluid. But they told me that without the surgery, the swelling would always return.
How much does the surgery cost, and how much have you been able to raise?
The surgery costs about N7m. They require N5m as a deposit and about N2m for other expenses. We were blessed that the Lagos State Ministry of Health helped us with N5m. But that money has been used for my ongoing treatment, tests, and hospital stays. Right now, we only have N3.5m left to raise to make the surgery possible.
What will happen if you don’t get the surgery done soon?
The swelling will keep coming back. Without the surgery, my heart condition will not be corrected, and my stomach will keep getting accumulated with fluid. My health will continue to deteriorate. Even walking is already difficult because of the pain and the heaviness in my abdomen. The surgery is my only hope.
If you were not in this condition, what would you be doing right now?
I would be in school, studying to become a doctor. That has always been my dream. I want to be a haematologist, so I can help people like me. If I regain my health, I will continue my education and work towards that dream.
When you imagine yourself healed and healthy, what is the first thing you want to do?
The first thing I will do is share my testimony. This has been the biggest battle of my life, and if I win it, I want the world to know that God saved me. Then I want to rebuild my life — return to school, build my career, and help other people facing similar or even worse health challenges.
Do you regret being born with sickle cell?
In the past, yes; I would ask, ‘Why me?’ especially when I saw my siblings healthy and full of life. But now, I see it differently. I thank God that at least I am still here. I am still breathing, and maybe my life will be a testimony to others someday.
What is your message to Nigerians, the government, and anyone who can help?
Please, I am begging — help me. Help me get this surgery so I can live again. I want to be free from this pain, from this misery. Even walking is scary and painful. I have dreams; I want to live long enough to achieve them. Whatever anyone can do to help me will mean the world to me.
How do you stay hopeful in the middle of this fight?
I trust God completely; I believe nothing is impossible with Him. He has kept me alive till now for a reason. That faith is what keeps me going, even when I feel like giving up.
How have your family and friends supported you?
My mum has been my rock. She motivates me, lifts my spirit, and never lets me give up. My elder brothers try to make me laugh and keep me happy. My younger sister is my best friend and my biggest cheerleader. She is always by my side.
My dad may not be with me physically all the time, but he is with me in prayers. Even my teachers and people in my surroundings have shown me lots of love. I feel blessed to have these people around me.
Do you sometimes feel isolated because of your health?
Yes I do feel isolated because people don’t interact with me like a normal human being and they make me feel so different from a normal person.
How do you handle people’s reactions when they see your swollen stomach?
I just count it as them being so surprised and can’t hide their feelings about it and I try not to let it get to me. There was a time when the weight of it all pushed me into deep depression.
I even reached a point where I felt life was no longer worth living. But somehow, my faith became my lifeline, holding me through the darkest nights. I am forever grateful for the good people God placed around me.
Are there words people have said to you—good or bad—that you will never forget?
Over the course of this journey, I have experienced countless uplifting exchanges and equally countless hurtful ones. I have received words of encouragement, motivation, and heartfelt prayers that reassure me and keep me going.
I have also heard degrading and discouraging remarks that once made me feel like giving up. With time, however, the power of the kind and supportive words has helped me rise above the hurtful ones, and I no longer allow them to break me.
What lessons has this journey taught you?
That life is fragile, that faith is everything, and that no matter what people say, you must believe in your own story. Most importantly, you have to keep trusting God, no matter how dark the days may seem.
If your story goes viral and you get the help you need, what would that mean to you?
It would mean my voice was heard, and that people cared enough to save my life. It would mean I have a second chance to live….CONTINUE FULL READING>>>>>
