Wings of Fire: escaping the shadows of a rare disease that was undiagnosed for 25 years

The story of Adil

Since childhood, I have always looked physiologically thin. When I turned 4, my parents recognised that I was a little different compared to other kids my age. Despite taking me to the doctor, they were unable to diagnose the problem because all of my organs and body parts were functioning normally. They assured my parents that I’m in good health. Even during my school days, I was not able to play or run as much as my friends. I always felt exhausted, and because of this, I have faced a lot of body-shaming and negative comments while growing up. Over the years, due to the extremely hurtful comments by so many people, I stopped stepping out of my room. I used to spend time reading and watching movies. Books were my companions. They made me realise that if we have knowledge, we can excel in our lives.

I read Wings of Fire at a very young age; that was my trigger towards achieving in life. I understood that it was my responsibility to find a way to excel in life. My uncle often told me to discover our strengths. Do what is necessary to improve that skill. Manifest. Work towards your goal, and the whole process will not be easy. There’d be tough times and happy times, but consider all of that a part of your journey. To reach your dream, every part of that journey is essential. They teach us something. Learn from them and make the necessary changes in your life. We must also have faith in and enjoy the process. It may take longer than you’d expected. But if you give your 100 percent and put in a genuine effort, you’ll get there. You’ll one day accomplish your goal. Just like the phrase goes, “There’s only one way to learn.. it’s through action. Everything you need to know you have learned through your journey.” I decided to focus on my studies and joined mechanical engineering. I only weighed around 36 kg then. Everyone had treated me differently because of my appearance. But at that point, I had learned not to respond to or react to negative comments and body shaming. I had acquired the mental capacity to ignore such statements. Yet sometimes I used to feel odd around everyone. My mother and uncle were my constant support system. They encouraged me to do what I wanted to do.

All these years, even after consulting so many doctors, my symptoms persisted. Later in 2018, a doctor referred me to a hospital in Kerala. After performing a number of tests, they suggested undergoing a genetic test as my organs were operating normally, and in the MRI, they found deterioration in the white matter in brain tissues. It is a major symptom. In the year 2020, I was referred to a different hospital in Vellore. The doctors conducted a genetic study, and I was officially diagnosed with mitochondrial neurogastrointestinal encephalopathy (MNGIE), a rare, inherited disorder affecting mitochondrial DNA. It primarily impacts the digestive and nervous systems, causing symptoms such as gastrointestinal issues, muscle weakness, and neurological problems.

I used to do research and try to find more people with similar conditions. In the process, I found someone on Facebook who knows about this illness, and together we wanted to spread awareness about this rare disease. And last year, I came across an article in Rare Revolution magazine related to my situation. After reaching out to them, they featured my story in their January edition. Through it, a lot of people came to know about my condition. Later, news channels approached me for interviews. I was invited to the Josh talks to share my story. Right now, we have created a group on WhatsApp to identify and communicate with more people with this ailment.

It took me 25 years to get a proper diagnosis. It’s not because we don’t have good hospitals, healthcare, or doctors; this disease comes with complicated symptoms, and a lot of people are not aware of such rare diseases. This makes it very hard to identify these diseases in their early stages. Right now, we’re trying to bring awareness to people regarding this so that in the future, it won’t take so long for others to identify their condition because the longer it takes, the more chances our organs may get affected. It can affect our eyesight, hearing, body movements, nervous system, etc. Enzyme replacement therapy is considered a solution for this ailment, but right now, there are no facilities in India that facilitate this treatment. Through identifying more people, it would help us raise awareness and, at the same time, bring attention to the government that people with such rare diseases exist in the country. which, in turn, would help us get the required treatment and facilities. Normally People like us are remembered only on February 28th through videos and images, but afterward, we’re forgotten. I want to bring change to that.

These days, everyone is kind and considerate towards others because of the information and knowledge they receive from platforms like Instagram and other social media. But during my childhood, I faced a lot of body-shaming and hurtful comments. Everyone tends to segment and treat people differently. There are a lot of presumptions, and sometimes they’re too judgmental, even now. I’m not just talking about me. There’s a lot of differentiation regarding religion, interests, jobs, disabilities, etc. This society is made up of different kinds of people. Everybody’s different and unique on their own. You shouldn’t differentiate them; instead, show care and respect for everyone. Everyone belongs to this world. For example, some people may learn and understand things quickly. But for some others, it takes time. Everyone has their own pace. It doesn’t mean they’re less capable. Just like in the story, the hare runs faster and the tortoise a little slower.. but the tortoise does finish the race even though it moves slower. You cannot neglect people’s efforts. They’re trying at their own pace. We must appreciate it. We should be empathetic towards each other. Only a few people have shown me that. If not for my mother, uncle, and these few people, I’d never have reached where I am now. I’d have never stepped out of that difficult phase. I’m always grateful to them. Today, I work as an analytics consultant for Turn B Business Services Pvt. Ltd. And I’m really thankful for my team. They’re way too supportive and helpful. They have understood about my health conditions and provided me with the necessary assistance and encouragement.

We should try to understand that all this negativity affects the other person so severely. It exhausts you so much. When many people told me I couldn’t, I wanted to prove to myself that I could. It depends on how we take things. I could have listened to all that and stopped trying. But instead, I didn’t give up. That’s where the people who support us help. They taught me to believe in myself. They made me realise my potential. Likewise, I want you to know, believe in yourself, and believe in your dreams.. If you work hard and trust the journey, you’ll definitely achieve them all. I’d like to skydive. But right now, my health conditions are not favorable. But I strongly believe I can one day.