A 26-YEAR-OLD woman with a rare condition that makes her look decades older is challenging beauty standards by becoming a model.
Ehlers-Danlos syndrome is a fairly rare condition affecting only one in 5 000 worldwide; however, only a dozen people have been diagnosed with Sara’s type of the condition, dermatosparaxis Ehlers-Dalos syndrome.
The syndrome causes Sara to have soft, doughy skin that is extremely fragile, and her joints and muscles are also weak and often leave her in discomfort. Sara says, “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.” Although Sara doesn’t suffer from symptoms such as frequent dislocations and severely brittle bones, which are typically associated with sufferers from the classical type, dermatosparaxis Ehlers-Danlos does come with its own pitfalls. Sara says, “There are numerous Ethlers-Danlos patients out there who 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. But I have noticed as I get older that the irregularities and pain of my symptoms play a larger role in my life. I refrain from wearing super tight clothes because they cause constriction and the extra skin can rip.”
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