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My heart could explode at any time
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Having that impending doom, that makes me very anxious. The severity of my condition has affected my confidence and also my dating life
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Today, my friend Ting is joining me at our local bar as I go on a blind date for the first time
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I'm always nervous to tell a date how serious my condition is
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I just hope it doesn't put her off. How does that affect you with like dating and like trying to get to know different people
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Marfan syndrome is a rare genetic connective tissue disorder that affects multiple aspects
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of the body. It mainly affects the heart, eyes, skeletal system. I deal with an enlarged aorta
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For me personally, it gives me a lot of chronic fatigue every day. Marfan syndrome is an invisible
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illness for the most part, but it is also life-threatening. The connective tissue in
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your body that holds everything together inside is weaker. With my heart, that is the most dangerous
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area. I am on medication to help my heart rate go down. Knowing that I am taller than everyone
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and have long limbs has been a huge confidence issue. I feel that I am viewed differently than
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other people. I am six foot three. Growing up, I was always the tallest in my class
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I also have scoliosis, so kids would just see that and think, you look weird
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Remember this? Yeah. Little baby Grace. Look at how tall you are
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And I just figured because we had a tall family, but when Dr. Howard diagnosed you, it all made sense
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I was at my pediatrician checkup and he was looking at my long arms and limbs and fingers and he gave my mom a weird look She is an echocardiogram technician so she just kind of knew I thought I know how to
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take care of this girl and we can do this together. As far as the hurt of course I was worried every
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day all day because I knew too much. A common occurrence in Marfan syndrome is aortic aneurysms
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The aorta pumps the majority of the blood from your heart. Because it is made up of connective
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tissue, it is more likely to tear. So that is the most stressful and anxiety-inducing part
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just having that impending doom of my heart could explode at any time. It's literally a ticking time
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bomb. For my parents, it has been hard to wrap our heads around it and accept. I have already
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gone through so much because of Marfan syndrome, but there is more to come. It's always in the back
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of my head. Even now, you know, I still worry. I like to still be in the background, kind of
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making sure I know what's going on in case something really bad happens. I know there's
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some internal feelings and hard paths that we have been through and I'm sure there's more ahead
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but we'll get through them because I know she's strong. I decided to start sharing my journey on
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social media because I know that the best that I can do is talk about the condition and spread
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awareness. A lot of people comment that they have Marfan syndrome and they have never met another
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person with it and realizing that they are not alone. Today, my friend Ting is joining me at our
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local bar as I go on a blind date for the first time Ting is 4 Of course my best friend is very short and I am very tall I think I want to wear this sweater Oh my goodness That so cute It will match like
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my sweater. Yeah. Cute. How are you feeling about the date? I'm excited. I'm a little nervous, but
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I'm excited. I hope it goes well. I would say that my dating life has been affected by my
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condition because I didn't want to be seen as different or weird or complicated. Ting has been
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very supportive along with all of my other friends. Do you have any ideas of what you'll talk about
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and have you thought about maybe how you'll bring up your Marfan syndrome? Maybe when we're talking
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about like hobbies I can mention my advocacy work. Oh okay yep that is it. And then kind of go from
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there and explain. I'm gonna go get dressed. Okay, nice. I'm always, um, I guess protective. I hope
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that her blind date sees her for who she is and not just for her syndrome that she has. I just
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hope that she comes out happy and has a great experience. Oh my goodness, you look so cute. I
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love the fit. Thank you. Are you ready to go? Yes. Okay, let's go. I'm always nervous to tell a date
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how serious my condition is. I just hope it doesn't put her off. I don't know very much about
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my blind date today. I don't know anything about what they look like, where they're from
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anything like that. I'm feeling a little nervous, but I'm mostly just excited to
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meet somebody new, hopefully have a good conversation. Hi. Hi. How are you doing today? I'm good. How are you? Good. Are you used to this situation
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Have you been on camera a lot before? Yeah. Yeah? Um, I kind of do like social media, like content creation. Nice
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And some advocacy work with like, it's called the Marfan Foundation. Uh For Marfan syndrome Okay Just like what I have I not sure if I heard of that before to be honest Yeah most people don know what it is Usually when I tell people that I have
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Marfan syndrome, people often do not understand what I am saying or what it entails. It is
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important to me for especially a partner to know about what I may experience and what I have
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experienced in the past. It affects like the connective tissue so everything that like your
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body is held together by is kind of loose which is why I'm like so tall and like my long fingers
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and limbs and stuff. Creating connections can be really hard because I just kind of want other
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people to like look past it and realize that there's like more to me you know at the end of
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the day like the people that talk to you and get to know you as a person are like no matter what
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those are gonna be the best people for you definitely yep all right you want to knock off
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with me into the sunset i hope that my story inspires people to take a good out of bad
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situations and to look on the positive side of things while also normalizing chronic illness
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and disability in our society. Hey Grace, how did your day go? Hey Ting, it went really well
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Did you tell your day about your muffin syndrome? Yeah, it came up really naturally and I think she
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took it really well. That's awesome. I would say that my confidence has definitely improved
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especially within the past few years. I have accepted that this is my life and this is
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something that I was given. I hope that sharing my story can help people realize that people with
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invisible illnesses have a life worth living
