'I'm a real-life Wolverine - my rare condition makes me so unique'
A man dubbed the "real-life Wolverine" says he has learnt to love his rare condition as it makes him unique - and now he's winning fans as a model.
Model Faizy Legend, 27, was born with Waardenburg Syndrome - a group of genetic conditions that can cause hearing loss and changes in colouring (pigmentation) of the hair, skin, and eyes. Although most people with Waardenburg syndrome have normal hearing, moderate to profound hearing loss can occur in both ears. FAiZY is affected by deafness and wears a cochlear implant in his left ear.
During his teenage years his Waardenburg Syndrome began to cause vitiligo where patches of depigmented skin began to appear on various parts of his face, and his visible differences became even more pronounced.
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Faizy wears his vililigo and Waardenburg syndrome with pride now (mediadrumimages/Ferrell E Phelps)
Faizy shows off his vitiligo (mediadrumimages/Ferrell E Phelps)For a period FAiZY struggled with his self-image, but looking back he insists the challenges have actually made him stronger. He is a model and walked on runway exhibition, Skin I'm In Model & Talent, and upcoming events, "Above Rare" and MKexpo in 2024.
FAiZY's unique approach of positivity and self-empowerment have gained him 50,000 fans on Instagram and 85,000 followers on TikTok, racking up over three million likes on his videos.
One of the most physically noticeable effects of his Waardenburg Syndrome is vitiligo causing him to lose pigment in patches of his skin, something that caused FAiZY to struggle with self worth for a time.
Faizy was born with Waardenburg syndrome which made him profoundly deaf (mediadrumimages/@FaizyLegend)
(mediadrumimages/@skiniminmodel)"As I entered adolescence, another aspect of Waardenburg Syndrome emerged: vitiligo," said the model, from Houston, Texas . "Patches of depigmented skin began to appear on various parts of my body, and my visible differences became even more pronounced.
"Vitiligo presented a new set of challenges, as I struggled with self-image and societal standards of beauty. The emotional toll of vitiligo was profound. I often questioned my self-worth and felt the weight of societal expectations.
"However, with the unwavering support of my family and close friends, I began to reframe my perspective. I learned that true beauty lies in our uniqueness, and that our differences are what make us special.
Faizys vitiligo was evident even in childhood (mediadrumimages/@FaizyLegend)
Faizy as a young boy (mediadrumimages/@FaizyLegend)"Over time, I started to appreciate my vitiligo as an essential part of my identity, a visible reminder of my strength and resilience. My journey with vitiligo has transformed me into a model of self-acceptance and empowerment.
"Rather than concealing my unique skin, I have embraced it as a symbol of beauty and individuality. Through modelling, I aim to inspire others to embrace their differences and recognize that true beauty lies in our authenticity."
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FAiZY has embraced his Waardenburg Syndrome and everything about it that makes him unique and he has used the challenges as inspiration.
Faizy hiding his vitiligo (mediadrumimages/@FaizyLegend)
Faizy now embraces his medical conditions (mediadrumimages/Ferrell E Phelps)"Life often takes unexpected turns, and for individuals like me, born with Waardenburg Syndrome, these twists can be both challenging and transformative," said FAiZY. "Waardenburg Syndrome is a rare genetic condition that affects various aspects of one's physical appearance, including hair, skin, blue eyes, and hearing.
"My journey from childhood to the present day has been marked by the experiences of living with both deafness and vitiligo due to Waardenburg Syndrome. My early years were a mix of warmth, love, and curiosity. Born into a supportive and loving family, I was raised in an environment that encouraged me to embrace my uniqueness. However, it didn't take long for me to realise that I was different from my peers.
"The most noticeable aspect of my condition was a cochlear implant on my left side, the prominent white forelock, a striking streak of white hair that adorned the front of my head, and pigmentation spots on my face.
"This unique feature often drew attention and sometimes led to questions and curiosity from others."
(mediadrumimages/@FaizyLegend)Deafness is not a symptom everyone with Waardenburg Syndrome experiences, but FAiZY was born profoundly deaf and now wears a cochlear implant.
"Born into a hearing family with the gift of silence, my life embarked on a unique journey," he said.
"Deafness was my silent companion in a world filled with sound. My parents, ever the unwavering pillars of support, taught me the beauty of sign language from an early age with little signs for "mom," "dad," and "love ".
"We created our own world of understanding and affection. As I grew older, my parents began considering a cochlear implant, a decision made with the best intentions. They believed that this technology could open the doors to the world of sound and enable me to learn to speak English fluently.
"It was a monumental choice, as cochlear implants were a topic of debate within the Deaf community with some advocating that these are not worn by deaf people. Nevertheless, my parents made this decision out of love and a profound desire to provide me with the richest life experiences possible.
Faizy with his pet at home (mediadrumimages/@FaizyLegend)"However, as I reached school age, a significant decision awaited us: my education. My parents believed that mainstreaming me into a hearing school was the best way to ensure I had access to a broad range of academic opportunities.
"Their motivation was to provide me with the best education possible. Yet, this decision brought its own set of challenges, particularly in the realm of socialisation. I felt isolated and disheartened with my Waardenburg syndrome, as people taunted me for my vitiligo, calling me 'burned-face,' 'connect-the-dots,' and 'chicken pox.'
"My deafness further compounded the sense of exclusion, as it became evident that I wasn't included in the activities of my group of friends. Being the only deaf student in a hearing school was isolating.
"I often felt like an outsider, struggling to find friends who truly understood me. My parents, well-intentioned as they were, had inadvertently overlooked the importance of socialisation in my overall development.
"But life had another chapter in store for me. I found my voice and my community on a social media platform that became my haven. Through TikTok and Instagram, I shared my story and embraced my identity as a deaf individual. It was on this platform that I found my deaf friends from around the world who understood my experiences and shared their own.
"My journey from isolation to connection was a testament to the transformative power of social media which gave me a voice and the ability to share my story with others who had faced similar challenges. It was a bridge that connected me to a global community of deaf individuals who, like me, were on a journey of self-discovery and empowerment."
FAiZY is now an inspiration for others, encouraging them to love themselves and embrace what makes them different as a strength. My journey with Waardenburg Syndrome, marked by the unique challenges of deafness and vitiligo, has shaped me into the person I am today," he said.
"Through determination, a support system of loved ones, and a commitment to self-acceptance, I have not only overcome adversity but have thrived. My story is a testament to the power of resilience and the capacity of the human spirit to embrace uniqueness and find strength within.
"By sharing my story, I hope to inspire others facing similar challenges to embrace their differences, find their inner strength, and recognise that they are not that they are not defined by their condition but by their ability to overcome it. Waardenburg Syndrome has made me who I am, and I wouldn't trade my unique journey for anything in the world."
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