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“I was called alien”: Kerala youth with rare genetic disorder fights body shaming to succeed in life

Adil E

Growing up hearing taunts like “Will you blow away in the wind? Are you an alien?” is not an easy life for a youngster. But Adil E, 27, from Malappuram in Kerala, fought body shaming with courage and determination to lead a fulfilling life. Born with a rare genetic disorder affecting Mitochondrial DNA, Adil from Ponnani grew up differently from other children his age.

He was very lean, and his muscle mass never grew. He lacked the stamina and strength to play games or engage in physical activities like running or jumping. Left alone with no friends during school days, Adil turned to books to enrich his mind. For him, the autobiography ‘Wings of Fire’ by former Indian President Dr A P J Abdul Kalam served as a source of strength and inspiration to overcome the odds.

Now working as an analytics consultant for a company in Kochi, this graduate in Mechanical Production Engineering says that the shaming and abuse gave him the strength to become who he is now. A Josh talker and motivator, Adil now inspires youngsters and people with genetic disorders and physical disabilities to cultivate a positive outlook on life.

Adil E

“I suffered the shaming for almost 25 years. People still look at me. My family and I never knew the reason for my physical condition until two years ago when doctors could finally diagnose my condition – Mitochondrial Neuro-gastrointestinal Encephalopathy (MNGIE), a rare inherited disorder affecting Mitochondrial DNA,” Adil told “Open Digest.”

The disorder mainly affects the neurological and digestive systems, resulting in symptoms like neurological disorders, muscular weakness, and gastrointestinal problems. “Though Enzyme Replacement Therapy (ERT) is considered to be a possible cure for this condition, there are currently no facilities in India that provide this treatment,” he said.

Adil along with colleagues at his office in Kochi

Adil is now on a mission to raise awareness about this medical condition so that people do not remain ignorant. “I underwent various medical check-ups during my childhood. My family never knew what my condition was. It was a big relief for me when we could finally identify the reason for my unique physical condition. So, I want to spread awareness about this disorder so that it helps others,” Adil said.

Adil has created a WhatsApp group to identify and communicate with people who are suffering from the same disorder. To stay positive and forward-looking, Adil has created a bucket list of activities which he wants to do despite his physical frailty. He has done paragliding at Bir Billing, known to be Asia’s highest and the world’s second-highest paragliding site on January 1, 2022, and now he is looking forward to doing Skydiving in Dubai.

“People told me I couldn’t. But I want to show that I can. My family and friends are very supportive. They gave me the strength to believe in myself and realise my potential. I am fully aware of my disorder, but I will not give up. I have the willpower to do anything a normal person could do. I will keep dreaming and work to realise it,” said Adil.

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