

“I would say my biggest insecurity was my skin. As I got older it, it just kind of started to show more and more. I wasn’t bullied and my family and friends were very supportive, but I hated my skin. I was lucky I didn’t get any nasty remarks, but while my friends wore revealing outfits, I’d hide away in baggy clothes.
“It really was a difficult journey. But with the amazing support group that I had, I started to look at myself and my body in a completely different way. I was very insecure when I was younger and now I feel I am the most confident I have ever been. I tried to cover up my skin constantly. But now I think it’s just the most beautiful thing ever.
“Just the uniqueness and the rarity, the way the lines form and the art that is made from the patterns that are there. It’s amazing. It makes me so sad that I looked at it as just this ugly thing at one point in time.”
“The classical type of Ehlers-Danlos syndrome affects our joints, it affects our skin, everything. It’s a multi systematic disorder, so it affects every system within our body.”
“There are numerous Ethlers-Danlos patients out there that have joints dislocate all the time. They are constantly in braces or wheelchairs. Thankfully, I have not had that severity with my joints. I do have severe pain and things like that but they do not dislocate on a regular basis as of yet.
“I have noticed as I get older, my symptoms play a larger role in my life. I refrain from wearing super tight clothes because it causes constriction and, because of the extra skin, it can rip and cause tearing.”
“The majority of the Ehlers-Danlos patients take copious amounts of opioids and pain medications. I stick to more natural remedies and prefer massage therapies, acupuncture and essential oils. Anything that’s basically natural I am all for, including medicinal marijuana. I took a vow not to prescribe myself a day-to-day pain medication.”
Sara also spoke about her modelling aspirations, saying:
“I want to break society’s standards and what is viewed as perfection, to really show that it is your imperfections and your uniqueness that is the true beauty out there.
“We are in the generation of albinism models. We have melanin models. We have vitiligo models. We have plus size models. And those are all fabulous things. But the one thing that we are really missing are people with disorders within our everyday commercials.
“Personally I hope that by getting out there with modelling with my Ehlers-Danlos, I am able to almost be the face of Ehlers-Danlos. And not only, you know, raise awareness but spread the word, connect with people.
“I would like to go out to LA as soon as possible, given the modelling industry out there. I want to connect with new people to try and get my story out there and raise as much awareness as I can. That would probably be my venture for the rest of my life.”
Leave a comment