00:00I'm not drunk.
00:01I have a rare condition.
00:03I am gradually losing control of my muscles over time.
00:07I was a varsity cheerleader.
00:09I was the girl who would get thrown in the air.
00:12Now it is hard to get on the stairs.
00:15People have accused me of being drunk in public.
00:18They don't know me.
00:18They don't know my story.
00:20Like, how dare they?
00:21No!
00:22Today, my friend Madison is coming up.
00:24I'm going to go through my old cheerleading stuff
00:27for the first time in years.
00:29She wants to have fun.
00:30She wants to dance.
00:32She wants to have all the music experience.
00:39My name is Kirsten.
00:40I am 22.
00:42I have pre-trix ataxia.
00:44It causes progressive coordination loss in all of my muscles.
00:51It takes me a little bit when I get up to get ready for the day.
00:57Growing up, I never would have thought I would have this.
01:03I always thought I would be the person who could still do a backflip when they were 30 years old.
01:09Typically, when you get diagnosed, the doctors say you'll lose your walking in about 5 to 10 years.
01:20It affects speech as well.
01:22It can cause heart problems.
01:25Sometimes, when I'm more tired, I'm scared I'll fall.
01:29I do fall sometimes.
01:34Dad, will you help me bring my coffee out?
01:37Both my sister and I have F.A.
01:40They first suspected something with my sister.
01:45She was having some balance issues.
01:48I think the first time that I noticed something was wrong.
01:51I think when we went on our family vacation, I could kind of see her walk in her gate.
01:56I was like, it looks a little off.
01:58We really then just put Lauren kind of through the gauntlet for the next four months,
02:03going from doctor to doctor to doctor, trying to figure out what all this was.
02:07I remember vividly the balance test.
02:11I was like, I feel like all the tests they're doing to her and she's struggling with, I'm struggling with too.
02:18She did the balance test where she closed her eyes and she fell over and I'm watching her do that.
02:25And I closed my eyes and I kind of started swaying.
02:29They took my blood.
02:30My test results came back two weeks later.
02:33I was numb.
02:34I did not want to believe it.
02:36I didn't want anyone to talk to me about it.
02:39I was totally freaked out.
02:41My disease is progressive.
02:44So what I can do now, I won't be able to do in two years, four years.
02:48It is hard to stay positive when it is such a hard diagnosis.
02:52We try to continue encouraging you guys to live your dreams.
02:57They've changed a little.
02:58The diagnosis was definitely hard on my parents because no parent wants to hear that their two daughters
03:06both have a rare disease that's progressive.
03:10They don't really show that they're upset or struggling.
03:13But I'll catch them maybe being upset on their own and they'll try to act okay and strong for me.
03:20But I know it has to be really hard.
03:22You guys, you know, are now holding down careers and doing awesome.
03:27Just pushing through this and saying we're not going to let this defeat us.
03:31And there we go.
03:33It is terrifying knowing that I am going to lose functions in the future.
03:41I honestly try not to think about it.
03:45But when I do, I try to turn that fear into working out and fighting it.
03:53Keep those elbows straight.
03:57Physical therapy now is a way to kind of work out my stress and my anger.
04:02It's stress reliever.
04:04And I feel really accomplished when I finish a physical therapy session.
04:10It's difficult to watch, but we know it's necessary and we know where we're at.
04:14And we just got to keep pushing forward.
04:16All right.
04:16Here's my day in the life of living with Friedrich's ataxia.
04:23What are some of the negative assumptions people have made about your condition?
04:27People think I'm drunk.
04:29There have been instances where people are mean like bouncers and they're like,
04:34I don't care.
04:35You're making it up.
04:37I have spoke on TikTok about this topic and it was crazy to me how many people there are that
04:45do not care about people who have disabilities.
04:48They're like, if you have a disability, you shouldn't be out drinking.
04:52I am a human.
04:53I do deserve to go out and have fun and have social interactions.
04:58But it does really get to me because I'm like,
05:01they don't know me.
05:01They don't know my story.
05:03Like, how dare they?
05:04I want anyone with a rare disease to know that you are not alone.
05:11Hello.
05:12How are you?
05:13I'm good.
05:14I missed you.
05:15Come on in.
05:18Today, my friend Madison is coming over.
05:20She knew me before diagnosis and after diagnosis, she has been the greatest support.
05:27Do you remember when the day I got diagnosed and I called you?
05:32Do you remember that conversation?
05:34I do.
05:34It was so sad.
05:35I was so sad.
05:36I cried a lot.
05:38I cried a lot that day.
05:40I thought I would be that 40-year-old mom who could still do a backflip on the man.
05:46But if you would have asked me, I would have embedded on it as well.
05:50Yeah.
05:50Growing up, I was a varsity cheerleader.
05:52I was the girl who would get thrown in the air and I'd be on one leg.
05:56They'd throw me up and catch me on the other leg.
05:59How does it feel just looking at these now?
06:02I don't know.
06:03It kind of makes me sad.
06:05Yeah.
06:06Yeah.
06:06It does.
06:07Send me your pictures together.
06:09I love that picture.
06:10Is it hard that you know that you can't do stuff like that now considering you were an athlete your whole life?
06:19Yeah.
06:19I feel like I have this crazy skill and that got taken away from me.
06:24I miss being able to dance.
06:28I wish I could still dance and I've lost that ability.
06:33She wants to have fun.
06:34She wants to dance.
06:35She wants to have all these experiences.
06:40And she can't.
06:44And for me to see that is hard.
06:50I wish I could just pick her up and take her out there and dance with her.
06:53Like I always have to remind myself, it's okay.
06:56You're okay.
06:58Everything's fine.
06:59It was all about the fun, the friendships, and you can never take that stuff away.
07:05You're right.
07:06Nobody can ever take those from you.
07:08Yeah.
07:08You'll have those forever, those memories for sure.
07:10And we wouldn't have been so close.
07:12I know.
07:12We didn't cheer together all these years.
07:14I know.
07:15I love you.
07:16Ooh.
07:18I am hoping in the future there is going to be a cure and I'll never lose my walking.
07:24But even if I do, I just really hope with the future of the family someday and still do the
07:32things that make me happy.
07:34We love fishing.
07:35This was actually our first date ever.
07:37My boyfriend knew that I had F.A. when I first met him.
07:41In the past, guys have been totally freaked out by F.A. and their families.
07:45And they were like, you don't want to date a girl who's going to be in a wheelchair.
07:49When we first met and I first told you about F.A., what was your initial reaction?
07:55Um, at first I had no clue what it was, but I did a little bit of research and, I mean,
08:02it doesn't have no issue with it for me, so.
08:05And it's scary at all?
08:07No, it's not really, no.
08:08He is very understanding.
08:10He knows that I do get a lot more tired than he does and he will step it up and help me when need be.
08:17I've had a few people ask if I'm comfortable to be there to support you and that's totally
08:23something I'm willing to be here for and I'm thankful to have you with me.
08:29I hope that people know that if they have a disability or they're newly diagnosed with a
08:34health condition that it's not going to stop you from finding love and living your life to the
08:41fullest, you can find adaptions to do the things that you love to do.
08:46My perspective on life I am grateful for and I wouldn't have had that if I was not
08:52diagnosed with Friedrich's ataxia because I like to live my life to the fullest.
08:58I like to be happy and I try not to let the little things get me down in life.
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