00:00My heart could explode at any time. Having that impending doom that makes me very anxious.
00:07The severity of my condition has affected my confidence and also my dating life.
00:13Today, my friend Ting is joining me at our local bar as I go on a blind date for the first time.
00:19I'm always nervous to tell a date how serious my condition is. I just hope it doesn't put her off.
00:25How does that affect you with dating and trying to get to know different people?
00:32Marfan syndrome is a rare genetic connective tissue disorder that affects multiple aspects
00:37of the body. It mainly affects the heart, eyes, skeletal system. I deal with an enlarged aorta.
00:45For me personally, it gives me a lot of chronic fatigue every day.
00:50Marfan syndrome is an invisible illness for the most part, but it is also life-threatening.
00:56The connective tissue in your body that holds everything together inside is weaker.
01:04With my heart, that is the most dangerous area.
01:08I am on medication to help my heart rate go down. Knowing that I am taller than everyone and have
01:18long limbs has been a huge confidence issue. I feel that I am viewed differently than other people.
01:27I am six foot three. Growing up, I was always the tallest in my class. I also have scoliosis,
01:37so kids would just see that and think, you look weird.
01:44Remember this? Oh, yeah. Little baby Grace. Look at how tall you are. And I just figured,
01:52because we had a tall family, but when Dr. Howard diagnosed you, it all made sense.
01:56I was at my pediatrician checkup, and he was looking at my long arms and limbs and fingers,
02:06and he gave my mom a weird look. She is an echocardiogram technician,
02:13so she just kind of knew. I thought, I know how to take care of this girl, and we can do this together.
02:21As far as the hurt, of course I was worried every day, all day, because I knew too much.
02:26A common occurrence in Marfan syndrome is aortic aneurysms. The aorta pumps the majority of the
02:34blood from your heart. Because it is made up of connective tissue, it is more likely to tear,
02:41so that is the most stressful and anxiety-inducing part. Just having that impending doom of,
02:50my heart could explode at any time. It's literally a ticking time bomb.
02:55For my parents, it has been hard to wrap our heads around it and accept. I have already gone through
03:04so much because of Marfan syndrome, but there is more to come. It's always in the back of my head.
03:11Even now, you know, I still worry. I like to still be in the background, kind of making sure I know
03:17what's going on in case something really bad happens. I know there's some internal feelings and hard
03:24paths that we have been through and I'm sure there's more ahead, but we'll get through them
03:29because I know she's strong. I decided to start sharing my journey on social media because I know
03:37that the best that I can do is talk about the condition and spread awareness. A lot of people
03:44comment that they have Marfan syndrome and they have never met another person with it and realizing
03:51that they are not alone. Today, my friend Ting is joining me at our local bar as I go on a blind date
03:59for the first time. Ting is 4'11". Of course, my best friend is very short and I am very tall.
04:12I think I want to wear this sweater. Oh my goodness, that's so cute. It will match like my sweater.
04:20Yeah. Cute. How are you feeling about the date? I'm excited. I'm a little nervous, but I'm excited.
04:27I hope it goes well. I would say that my dating life has been affected by my condition because I didn't
04:34want to be seen as different or weird or complicated. Ting has been very supportive along with all of my
04:43other friends. Do you have any ideas of what you'll talk about and have you thought about maybe how you'll
04:48bring up your Marfan syndrome? Maybe when we're talking about like hobbies, I can mention my advocacy
04:55work. Oh, okay. Yep. And then kind of go from there and explain. I'm gonna go get dressed. Okay, nice.
05:02I'm always, I guess, protective. I hope that her blind date sees her for who she is and not just for
05:10her syndrome that she has. I just hope that she comes out happy and has a great experience. Oh my
05:17goodness, you look so cute. I love the fit. Thank you. Are you ready to go? Yes. Okay, let's go.
05:24I'm always nervous to tell a date how serious my condition is. I just hope it doesn't put her off.
05:29I don't know very much about my blind date today. I don't know anything about what they look like,
05:35where they're from, anything like that. I'm feeling a little nervous, but I'm mostly just excited to
05:40meet somebody new and hopefully have a good conversation.
05:46Hi. Hi. How are you doing today? I'm good. How are you? Good. Are you used to the situation? Have you been on camera a lot before?
05:55Yeah. Yeah. Um, I kind of do like social media, like content creation. Nice. And some advocacy work
06:04with like, it's called the Marfan Foundation. Uh-huh. For Marfan syndrome. Okay. Just like what I have.
06:10I'm not sure if I've heard of that before, to be honest. Yeah. Most people don't know what it is. Yeah.
06:15Usually when I tell people that I have Marfan syndrome, people often do not understand what I am
06:25saying or what it entails. It is important to me for especially a partner to know about what I may
06:35experience and what I have experienced in the past. It affects like the connective tissue. So everything
06:43that like your body is held together by, um, is kind of boots. Okay. Which is why I'm like so tall
06:49and like my long fingers and limbs and stuff. Okay. Creating connections can be really hard because
06:56I just kind of want other people to like look past it and realize that there's like more to me,
07:02you know? At the end of the day, like the people that talk to you and get to know you as a person are
07:07like, no matter what, those are going to be the best people for you. Definitely. Yep. All right,
07:12you want to knock off with me into the sunset?
07:16I hope that my story inspires people to take a good out of bad situations and to look on the
07:23positive side of things while also normalizing chronic illness and disability in our society.
07:30Hey Grace, how did your date go? Hey Jane. It went really well.
07:33Aww. Did you tell your date about your muffins in jail? Yeah, it came up really naturally and I think
07:39she took it really well. Aww, that's awesome. Yeah. I would say that my confidence has definitely
07:45improved, especially within the past few years. I have accepted that this is my life and this is
07:52something that I was given. I hope that sharing my story can help people realize that people with
08:01invisible illnesses have a life worth living.
