Woman’s body is so weak she’s ‘melting’ after being born with extremely rare condition
Topics: Health, Mental Health, Social Media, YouTube
Poppy Bilderbeck
Featured Image Credit: YouTube/Special Books by Special Kids
Topics: Health, Mental Health, Social Media, YouTube
A woman has opened up about her experiences living with a rare connective tissue disorder, which leaves her so weak it feels like she's 'melting'.
Kayley was diagnosed with Loeys-Dietz syndrome - a rare condition which she calls 'melting' disorder - at the age of nine years old.
Now in college studying music, she's raising awareness about the condition and how it impacts her day-to-day life.
Loeys-Dietz syndrome is 'a genetic condition of connective tissue which causes changes in the heart, blood vessels, bones, joints, skin, and internal organs, such as the intestines, spleen, and uterus,' The Marfan Condition states.
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It continues: "Some features like aortic enlargement (expansion of the main blood vessel that carries blood away from the heart to the rest of the body) - can be life-threatening."
Kayley has opened up about her experiences with the condition and how it impacts not just her physical but mental health too in a video with Special Books by Special Kids.
In a video shared to Special Books by Special Kids' YouTube channel, Kayley says she likes to call her disorder the 'melting disorder' explaining her 'connective tissue is super weak and so doesn't really hold [her] up, [her] skeletal system'.
"Connective tissue is kind of like a glue for your body and since mine is weaker, my body just isn't put together very well," she adds.
Kayley reveals she's not always had the most positive responses from others when it comes to her disorder, particularly in terms of how it impacts her appearance.
One person reportedly told her: "Ever since I met you I was so grateful about what I look like."
Kayley reflects: "I was like, 'That's crazy. I can't believe you said that'."
She notes you 'kind of have' to develop a dark sense of humor as a result but notes the 'audacity of some people' is really 'wild'.
And Kayley has also struggled with aneurysms, 'clubbed feet' and contractions in her hands and unfortunately because she 'waited so long' to go to the doctors, they were unable to offer her a solution. However, she has adapted and found a way to play guitar despite the contractions.
Kayley continued: "I have the body of a 75-year-old. [It feels] rough. I mean you get tired really easily."
And knowing some reports state the life expectancy of people with Loey-Dietz is around 36-37 years old is something which plays on Kayley's mind a lot too.
Last year, one of Kayley's friends who also has her disorder passed away.
Kayley opened up: "That was the time where I knew that I had to really figure out how bad this was. The night before she passed away, we were texting about how similar our symptoms were. That shouldn't be something that freaks you out, but when you pass away the next day it's like, 'Okay, so how similar are our symptoms really?'"
However, Kayley notes the illness is not a 'terminal illness'.
"The life expectancy is really not an accurate depiction, but it's still terrifying," she says. "Like when you have people you know who are your age that pass away, it can really altar the way you think about the world."
Kayley holds a fear of 'not having enough time' and explains she's been through 'seasons of really bad depression' and it's 'still hard,' but also 'simultaneously has so much joy and love for this planet and the people'.
She resolves: "I am the most lucky person I know. I mean I'm going to school for music and I get to eat wonderful food every day and I have a disorder but there are so many people who would rather live until 36 and have a wonderful life then live to 90 and have a horrible life.
"So I think it's just counting your blessings, but acknowledging life is hard and you'll be able to get through it."
If you or someone you know is struggling or in crisis, help is available through Mental Health America. Call or text 988 to reach a 24-hour crisis center or you can webchat at 988lifeline.org. You can also reach the Crisis Text Line by texting MHA to 741741.