Man, 23, with rare genetic disorder that left him blind shows others battling rare diseases that ‘anything is possible’

A 23-year-old man who has a rare genetic disorder and is registered blind wants people to know that “nothing is impossible” and is determined to challenge the stigma and misconceptions often associated with blindness.

Bilaal Ali, from Sheffield, was diagnosed with Bardet-Biedl Syndrome (BBS) at birth and shared that although he struggled with confidence during his school years, his self-belief is stronger than ever as he continues to break down barriers and defy expectations.

According to Bardet-Biedl Syndrome UK (BBS UK), BBS is a rare, genetic disorder, which affects approximately 1 in 100,000 babies and some of the condition’s key features include rod-cone dystrophy – a progressive eye disorder that leads to blindness – obesity, renal abnormalities, learning difficulties and extra fingers and/or toes.

“Its effects vary greatly from person to person, there is no single ‘typical’ experience,” said Tonia Hymers, CEO at BBS UK.

“People and families living with BBS need tailored and holistic support from health, education, social care, and community services to thrive.

“By raising awareness, we can reduce isolation, improve understanding, and help ensure that people with rare conditions receive the support they need at every stage of life.”

Bilaal who, ahead of Rare Disease Day on February 28, is keen to spread awareness about BBS, shared that the condition mainly affects his eyesight, weight and kidneys.

“My eyesight has got progressively worse over time,” Bilaal told PA Real Life.

“I have been registered blind since 2017, but I was partially sighted before that.

“Right now I can’t read anything that is not electronic, but in the past I used books with large text at school.

“I found the stage where you move from childhood to adulthood hard, and I didn’t use my cane at school much until I was 16 because I was always thinking about what people would think or say. But when I began to lose my sight more and more, it wasn’t really a choice anymore.”

He added that as well as the physical limitations, losing your sight can also affect your confidence, relationships and social situations.

“Friendships and relationships have been difficult at times,” shared Bilaal, who is currently studying accounting and finance at Sheffield Hallam University.

“I have good friends now, but earlier in my education I often felt isolated. Because I had a support worker in class, it sometimes made me feel separated from other students, even when that support was necessary.”

Another hidden challenge is communication.

“In group conversations, I can feel limited because I can’t see facial expressions, body language, or eye contact,” said Bilaal.

“That can make it hard to know when to join in, or whether someone is speaking to me, which can leave me feeling excluded even when people don’t mean to do it.”

Since being registered blind, the accounting student has had to rely much more on his other senses.

“My hearing is very good, so I rely on that a lot. I also rely heavily on my memory, as I have got a very good memory,” explained Bilaal.

The 23-year-old also has carers and lots of technology that helps him with day-to-day life.

“I have a lot of technologies, such as my phone and a laptop, and I recently purchased Meta AI glasses,” said Bilaal.

“The glasses are useful because they give a description of what’s in your surroundings. For example, if you’re reading stuff that’s not electronic, such as a menu, they will read it out loud for you.”

Finding out about BBS UK a few years ago was a pivotal moment for him.

“I previously didn’t know anyone that had the same condition as me, but since connecting with BBS UK I have met so many people with BBS and have made new friendships,” said Bilaal.

“I joined as a trustee in November 2024 because I’ve lived my whole life with BBS and just wanted to give something back to the community. It has also taught me so much more about the condition, as there is always something new to learn.”

Alongside his role at BBS UK, Bilaal is very active and stays busy with hobbies and sports.

“I enjoy playing blind football and blind tennis. I also go to the gym and enjoy swimming,” said Bilaal.

“Being active is really important. It helps me manage my weight, which is really important for someone with BBS, but it also has a lot of mental benefits. It’s a great way to connect with other blind people and is a fun way to take my mind off things if I’ve had a bad day.”

One of his proudest achievements is completing the Vitality London 10K to support BBS UK in September last year.

“I ran with one of my friends and felt a great sense of achievement after I finished it, but my feet and legs were also very sore,” said Bilaal.

“I am hoping to do another 10K this year or next year to beat my time.

“I hope it shows other people with my condition that BBS doesn’t stop you from doing anything.”

The BBS UK trustee is keen to dismantle any negative stigmas surrounding blind people.

“Some people will see a blind person and will presume you can’t do anything. I always remind myself that they don’t know me, what my journey has been or what achievements are,” said Bilaal.

He is due to graduate from university this summer and has reflected on his achievements over the last few years.

“Throughout my time at uni so far, I have achieved the Inspiration Student Award, I’ve been on BBC Radio, I’m a published author, and did work in industry placement last year,” said Bilaal.

“I also got to drive an Aston Martin and a Ferrari at a driving experience last year in Leicestershire which was amazing.

“I want other people to know that nothing is impossible and that it’s important to embrace these differences as it’s a big part of who you are.

“My GCSE grades were terrible but now I’m nearly finishing a university degree and I want people to know that if you put in the work, anything is possible.”