Avril was diagnosed with Parry-Romberg Syndrome, a rare condition that gradually deteriorates tissues on one side of the face. Today there are approximately only 3000 people globally with the condition. Her journey began subtly during childhood after being diagnosed with epilepsy when she was 9 years old. Avril was diagnosed with Parry-Romberg Syndrome, a rare condition that gradually deteriorates tissues on one side of the face. Today there are approximately only 3000 people globally with the condition.

Her journey began subtly during childhood after being diagnosed with epilepsy when she was 9 years old. The syndrome is characterised by gradual shrinkage and degeneration of the tissues beneath the skin and at first for Avril, it was just small changes, barely noticeable when she was little. But as she grew, the asymmetry became more pronounced, affecting one entire side of her body. It wasn't just cosmetic; the condition brought with it a host of other medical issues like epilepsy, muscle spasms, and chronic pain due to deteriorating bones.

Living with a condition that causes facial differences is a daily challenge, more so, especially as a child when you want to fit in with your peers.  This is something that Avril faced during her own childhood. “So as you can imagine, with a visible difference, children notice and they aren't exactly friendly in school, they pick on people that look different, so I had some of that. But, I was lucky to find a really nice, supportive group of friends who are great with my epilepsy. My whole form group was really good.”

Living with a condition that causes facial differences is a daily challenge, more so, especially as a child when you want to fit in with your peers.  This is something that Avril faced during her own childhood. “So as you can imagine, with a visible difference, children notice and they aren't exactly friendly in school, they pick on people that look different, so I had some of that. But, I was lucky to find a really nice, supportive group of friends who are great with my epilepsy. My whole form group was really good.”

Parry–Romberg syndrome has caused many difficulties and pain for her over the years and she has undergone numerous medical procedures aimed at managing the symptoms and appearance of the syndrome. One significant operation when she was eleven involved cutting the roof of her mouth, adjusting the bone, and rewiring her teeth. An operation that would overwhelm anyone, let alone an child. These interventions, while helpful, have often been temporary solutions but have built Avril into the lady she is today.

“I think it's given me empathy, understanding and resilience. I think the desire to change the world for the better, and increase more awareness about unseen disabilities, visible differences, and rare conditions, and diseases is so important.”

As an adult, her focus has shifted toward advocacy and raising awareness about Parry-Romberg Syndrome and other visible differences. Working with organizations like Changing Faces, she strives to educate the public about the importance of treating everyone with respect and dignity, regardless of appearance. Her condition has instilled a deep empathy for others facing similar challenges, fuelling her passion for disability rights and inclusive representation.

Navigating the professional world with a visible difference presents its own set of challenges. From ensuring reasonable workplace adjustments to combating overt and subtle discrimination, she has learnt to advocate fiercely for herself and others, ensuring that disability does not define one's skill or worth. Her confidence has grown from her initial start in politics where speaking to large audiences or in fact, being on camera filled her with dread.

“It's taught me how to be more resilient. I struggled in politics. Initially, having to speak on camera or speaking to a large audience and being confident in how I looked and presented on camera was a real barrier for me. When I was in school, and they had the annual school photo, I used to absolutely hate having my photo taken, I'd quite happily be behind the camera, taking photos, but I didn't want to be the subject in front of a camera. Just presenting myself was a real struggle. I lacked the confidence and self-esteem.”

Life with Parry-Romberg Syndrome for her, is a continuous journey of self-discovery, strength, and advocacy. It has taught her the importance of visibility for those with differences and the transformative power of acceptance. Looking to the future, she is fully committed to fostering environments that embrace all forms of diversity, ensuring that the next generation sees inclusivity as the norm rather than the exception. Having worked in an educational environment in the past, she understands the importance of inclusivity for all and the need for education around differences in others to help reduce bullying and improve self-esteem in children, including more training around bullying for not only children but for teaching staff also.

“I went through secondary teacher training after my degree and believe that there are aspects of bullying in school that teachers and classroom assistants do need to be aware of. These days, the psychology of learning is something that I don’t think enough teachers know enough about. It was something I was passionate about as a secondary student teacher. People with so many different disabilities and neurological conditions need that extra support for learning and that extra time. It’s not always forthcoming. Some schools do brilliantly at it, but some don’t.”

It is not just in teaching and education where improvements are needed. Society as a whole needs better understanding and more education. Having more visibility of disabilities and facial differences can also bring awareness and empathy.  This is something that Avril knows needs to happen.

“Disabled people represent a large percentage of the population, and yet so much needs to be done for inclusion and accessibility in this country and beyond, including with infrastructure. When you don't have disabled people consulted or making those decisions then the right changes tend to be overlooked, never considered, and not made. I'd like to encourage more support for reasonable adjustments under the Equality Act 2010 For people with a visible difference, or with disabilities who don't fit their stereotypical mould.”

Our experiences are unique, but together, we can forge a path toward a more understanding and inclusive world. I hope to extend a message of hope and solidarity to anyone navigating life with a visible difference.

“I think it's imperative that there is much more inclusion of people with a visible difference, or a disability in the mainstream media, on whatever kind of media that is TV press, magazines, social media, simply because when it becomes the norm, then people don't look at people with a visible difference differently, that they don't stare, and it's more widely accepted and are treated like anybody else.”