Sara Geurts is only 26 years old but looks way older than
that, and the reason is a rare genetic condition which makes her have
excessively saggy skin. In spite of that, she is determined to launch a
successful modeling career.
The aspiring model from Minneapolis, Minnesota, is one of
the only 12 people in the entire world living with the condition called
Dermatosparaxis Ehlers-Danlos syndrome (EDS).
EDS causes Sara to have soft, doughy skin that is extremely
fragile, as well as weakened joints and muscles that cause her so much pain.
Sara grew up hating and hiding her wrinkled body but she has
now accepted her unique look and intends to move to Los Angeles and start a
career as a mod
She said: “I noticed it as early as about the age of seven
and was diagnosed at 10. In high school, I just tried to cover it up. I didn’t
want anyone to ask me questions about it. I didn’t want to talk about it.
“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.
Sara began to see herself in a new light following a break
up at age 22. The heart break prompted her to change how she saw herself.
She explained:
“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.”
Ehlers-Danlos syndrome is a rare condition that affects only
one in 5,000 people worldwide, however only 12 people have been diagnosed with
Sara’s type of the condition.
Sara said:
“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.”
Sara is lucky in the sense that she doesn’t suffer from
certain symptoms like frequent dislocations and severely brittle bones, that
EDS sufferers are known to experience. She’s aware that she’s lucky in this
regard, and she doesn’t take it for granted.
She explained:
“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.”
Sara relies on natural remedies such as massage therapy,
acupuncture and medical marijuana to help in dealing with her joint pain.
She said:
“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.”
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