Rarely Reframed - Amba — Same but Different

Rarely Reframed 

Amba – Sturge-Weber Syndrome

Living with a facial difference has shaped Amba’s identity and interactions with the world in profoundly challenging and unexpectedly empowering ways. Having a birthmark that covers not just her face, but stretches from her head to her toes it also affects even her internal organs. Known as Sturge-Weber Syndrome it has been a part of her life since the day she was born.

Amba has Sturge-Weber Syndrome — All photographs by Ceridwen Hughes

Her birthmark has been prominent from her earliest memories and is responsible for many hospital stays from a young age. “I've had operations for my eye condition, glaucoma, which can be a part of the Sturge Weber syndrome. I've had laser treatment to try and reduce the colouration of my birthmark, to try and make it less visible. But unfortunately, it will never fully go away. It's just kind of like a maintenance thing. I’ve had so many tests and a lot of internal surgeries as well. I've been in hospital pretty much all my life. I can't remember a time I wasn't. It's been very apparent to me from such an early age that this was kind of my normal.”

As time has progressed Amba has moved from children’s health care to Adults and this brings its own issues and new challenges. “An adult's Ward is harder because I don't have that kind of surround sound of my mum being there all the time. It’s a new environment with a lot of other people who have other conditions. It is a lot harder to cope with that. I now must do the speaking about my condition and signs and symptoms rather than having a parent there to kind of take that lead and take that charge.”

Social interactions are difficult at times for her. From staring eyes in public spaces to awkward pauses when meeting someone new, Amba finds herself becoming a focal point of curiosity, and sometimes, misunderstanding. Learning to navigate these interactions without internalising every reaction is an ongoing process, being bullied when younger has left her with emotional scars, but she tries not to focus on this and looks to her future.

“Sometimes people do treat me differently. They think I'm not able to carry out the same tasks as maybe my peers around me, which can get quite frustrating. Because I know, I can, I just work a little bit harder than everyone else and it may take me a little bit longer, but I will get there at the same point as everyone else around me.”

From a young age and wanting to fit in makeup became her refuge. It was a tool to blend in, to cover the redness and the stares that came with it. Over time, her relationship with makeup evolved from a shield into a means of expression. It became an art, a way to communicate how she felt about her condition and the world's reaction to it. Whether creating looks that embraced her birthmark or those that covered it, each choice was a statement of her autonomy over my appearance.

A black and white photograph of Amba taken by Ceridwen Hughes

“Sometimes people do treat me differently. They think I'm not able to carry out the same tasks as maybe my peers around me, which can get quite frustrating. Because I know, I can, I just work a little bit harder than everyone else and it may take me a little bit longer, but I will get there at the same point as everyone else around me.”

From a young age and wanting to fit in makeup became her refuge. It was a tool to blend in, to cover the redness and the stares that came with it. Over time, her relationship with makeup evolved from a shield into a means of expression. It became an art, a way to communicate how she felt about her condition and the world's reaction to it. Whether creating looks that embraced her birthmark or those that covered it, each choice was a statement of her autonomy over my appearance.

“I've been using camouflage makeup to cover my birthmark from the age of seven years old, it's quite a long time. I just love the fact that makeup can change and transform a person into something completely different. I think during my teenage years, when I was covering the birthmark on my face I believed I could transform into the most confident and beautiful Amba, I could thrive each day. Whereas if I wasn't to wear makeup, I think I'd be the complete opposite, that's what I thought at that time. Looking back now I just realised that makeup is just a mask I'm still the same person underneath with makeup or without makeup. I think it's more my determination to push through with whatever challenge that is to succeed.”

Amba has a lot of determination and has embarked on university life, in a new city without the familiarity of her home and her family. Attending university was a significant milestone, its the first time she has truly been by herself.

“I definitely wanted to make my family proud. I'm the first person in my family to go to university. I wanted to show people that I'm more than just my condition. I'm much more smarter, brighter and I can achieve the same things that everyone else can around me.” Her confidence has grown despite being such a daunting time for her. University life has offered new challenges but also new opportunities to advocate for people with visible differences.

“I think being born the way I have, it's driven me and I have the chance to spread awareness to others, about differences and many other conditions. I have very strong opinions because I know how it feels. For example, in film and TV that character doesn't need to have a scar to play the villain or the baddie. I think, for once, we should see the hero, have a scar, and be proud of it.”

As she navigates adulthood, her goals include not just personal achievements but also broader advocacy for facial equality. Striving to use her experiences to foster understanding and acceptance, to challenge the stereotypes and stigmas associated with visible differences. Her condition, while a significant part of her life, does not define who she is at all, she is so much more. Unfortunately, the lack of awareness of differences and today's culture does affect her, especially staring.

“I think staring is definitely difficult to deal with, not just for myself, but also my family around me. Sometimes, I think it would just be better if people just come up and ask, I'm quite an open person anyway, regarding my condition, if they see someone in the future with it, there'll be like, ‘Oh, that's a birthmark’ that person then won't get the same reaction I did. But, other times, if you're having a bad day, you don't want to explain yourself and your condition and why you look like that. Sometimes you just want to get on with it. I feel like a lot of the time when I walk around and I don't have makeup on I walk with my head held low. Because I don't want to be asked a bunch of questions, it gets frustrating.”

An image of Amba taken by Ceridwen Hughes for the Rarely Reframed project

As she navigates adulthood, her goals include not just personal achievements but also broader advocacy for facial equality. Striving to use her experiences to foster understanding and acceptance, to challenge the stereotypes and stigmas associated with visible differences. Her condition, while a significant part of her life, does not define who she is at all, she is so much more. Unfortunately, the lack of awareness of differences and today's culture does affect her, especially staring.

“I think staring is definitely difficult to deal with, not just for myself, but also my family around me. Sometimes, I think it would just be better if people just come up and ask, I'm quite an open person anyway, regarding my condition, if they see someone in the future with it, there'll be like, ‘Oh, that's a birthmark’ that person then won't get the same reaction I did. But, other times, if you're having a bad day, you don't want to explain yourself and your condition and why you look like that. Sometimes you just want to get on with it. I feel like a lot of the time when I walk around and I don't have makeup on I walk with my head held low. Because I don't want to be asked a bunch of questions, it gets frustrating.”

Living with a facial difference all her life has taught her resilience, empathy, and the importance of visibility for marginalised communities. Each interaction, whether challenging or supportive, has shaped her into the young lady she is today, reinforcing her commitment and determination to improve the lives of others living with visible differences.

Awareness is the key and something Amba wants more of. “I started sharing my story because I wanted just one young person not to go through what I had to go through at that age. I know I've already achieved that. It's just so great to see the impact my story has had on others across the world. I'm pleased that I'm doing this for them, but also for my younger self, because I didn't have a role model to look up to during difficult times or know how to deal with bullying, I've had to learn on my feet. Whereas now there's so much out there, so many resources and different charities, I think it's great. I think it's a turning point for this generation, and it can only go up.”

By sharing her story, she hopes to contribute to a greater dialogue about diversity in appearance and to encourage a more inclusive perspective that values every individual, not for how they look, but for who they are.

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STURGE-WEBER SYNDROME (SWS)

Sturge-Weber syndrome (SWS) is a rare vascular disorder characterized by the association of a facial birthmark called a port-wine birthmark, abnormal blood vessels in the brain, and eye abnormalities such as glaucoma. SWS can be thought of as a spectrum of disease in which individuals may have abnormalities affecting all three of these systems (i.e. brain, skin and eyes), or only two, or only one. Consequently, the specific symptoms and severity of the disorder can vary dramatically from one person to another. Symptoms are usually present at birth (congenital), yet the disorder is not inherited and does not run in families. Some symptoms may not develop until adulthood. SWS is caused by a somatic mutation, most commonly in the GNAQ gene. This mutation occurs randomly (sporadically) for no known reason.

To learn more about Sturge-Weber syndrome (SWS) click here.

Source: https://rarediseases.org

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