Now this is Shari. She’s wonderful. We first met Shari, and her mum Adele, at their Mother & Daughter zombie themed photoshoot! This incredible pair have a wonderful relationship which we were able to capture whilst Adele still had the strength to walk. We were thrilled when Shari came back to say hello and enjoy a Boudoir photoshoot with us. We loved catching up and was amazed at her, and her mum’s story… We’ll let Shari do the talking.I’ve always been interested in the world of “alternative beauty” and beauty in subcultures that defy the norm. I grew up in a world of heavy metal music, piercings and tattoos. I was fascinated by the different styles and ways in which people could express themselves. I would dream of being an adversary of diversity and to one day be covered in beautiful works of art, be it alternative fashions or tattoos. However, I noticed the lack of representation in modern media of these beautifully diverse sub cultures. I wanted to change that, somehow, and modeling seemed like a way to do this, but I have next to no self-confidence. A lot of my self-confidence issues stea
m from my disability. I was made to feel un-desirable and unattractive because I have a disability.
Most of my earliest memories of my Mum she was struggling with joint pain, mostly knee pain. She was constantly fighting for answers and her doctors at the time just did not believe that she was in the amount of pain she was saying he was in. After a long 9 years of battling against her GP she finally got some answers. She had torn her ACL ligament and she was slowly grinding away her cartilage and bones in her knee. Even after reconstructive surgery she was
struggling immensely. At this time, I was around 10 years old and began experiencing joint problems myself, this was put down to growing pains and nothing came from it. After a further 10 years of no answers and another knee surgery my Mum stumbled across an article online about a rare genetic condition called Ehlers-Danlos Syndrome (EDS). EDS is a connective tissue disorder that effects the collagen gene. The mutation causes the collagen to be less elastic and weaker than it should be meaning that it’s not as strong as it should be. “Normal” collagen is like anelastic band. When it stretches it bounces back into its original form, but with EDS it doesn’t bounce back like it should leaving it weak and over stretched. The more it stretches the worse it gets so this condition is also progressive. This means that the collagen, that’s found in every inch of the body, simply isn’t strong enough to support everything from joints to vital organs. Everything just clicked for my Mum and the more she found out about this condition the more the last 19 years made sense. She then began to remember all the times I would be in tears because I was in so much pain. If she had this condition, then there was a 50/50 percent chance that I had the same condition and I had already shown so many of the diagnostic markers. Shortly after my Mum got her formal diagnosis of EDS, a whole year and a half after she first heard about it, I was also diagnosed.By the age of 20 I had already dislocated my left hip multiple times and was experiencing chronic pain, fatigue, digestive issues to name a few. Meanwhile, my Mum had gone from doing a highly intensive, physical job every weekend to being completely bed bound and relying on a wheelchair to get around. This is when I started to need to wear joint supports. I became incredibly self- conscious about my condition and tried to hide it as much as possible, even though it was detrimental to my health. I just wanted to feel “normal” and in this state of dysphoria I felt incredibly self-conscious and in turn very unattractive. Even though for the most part Ehlers-Danlos Syndrome is an invisible illness I was still very mindful of the visual necessities of the condition. I needed to be reminded that despite my condition, I could still be beautiful.I saw that Firefly had posted about a body confidence campaign, in 2018, and after a little pushing from friends and family I decided to apply. Needles to say, I was terrified. I thought that it would boost my confidence and potential help other with disabilities to remember that that they are beautiful. Every step along the way the Firefly team made me feel extremely comfortable, welcomed and answered any questions that I had. They were very understanding of my disability as well and made sure I was comfortable during the shoot. The hair and makeup artist, Tasha, did an amazing job and she was asking me my opinion throughout the entire process and really made sure that I felt confident in the makeup. The photographer, Toni, had some beautiful poses in mind and was really open to suggestions and adaptions to make the poses more comfortable for me. I really felt like a supermodel and I felt like I could conquer the world. I have really discovered confidence in myself that I had never knew that I had, especially because of how Ehlers-Danlos Syndrome has affected me. A massive thank you to everyone at Firefly Photography and I couldn’t recommend the Boudoir Experience enough.