I'm 23 & Turning To Stone: Living Differently

it is a rare genetic condition and it turns muscle tissue into bone essentially causing me to grow a second skeleton my shoulders and knock my jaw in my hip of five to be the most [Music] [Music] my right hip is locked so I stand like a flamingo but my foot doesn't reach the ground all the way which is why I walk with a limp so when I stand I just have really good balance for me it's more comfortable because if I were to stand like with two feet I would stand like this is it very helpful it's easier because I can stand straight and then talk to someone whereas if I stood with both feet on the ground I'd be talking to the ground not often do you need to talk to the ground the first thing to go was there was a lot of swelling in my back that has caused that over time to just turn into a sheet of bone I have progressively lost more movement in my shoulders and neck to at this point where I have almost none so Carly can't bend at her waist she cannot raise her arms overhead luckily she still has movement that she can get to her mouth but I helped her with her earrings I helped her shower I do her hair put her shoes on and we drive her places that she needs to go so I was diagnosed with FOP at five and a half I took a really bad fall in 2001 off of the back of a barstool and had a lot of swelling okay we went to the doctor when we brought Carly in to have her looked at that's when dr. Schmidt looked at us and said you know I just want to see your feet he looked at her feet and said you know I think I know what this is he wrote it he wrote it on a piece of paper and said you know there'll be some specialists you'll have to see basically that's when we found out it can be triggered by a fall or even something as well as a paper cut can trigger new bone to form and sometimes it's nothing at all I could fall today and nothing would happen but if I took the same fall another day it could cause me to lose mobility so it just it kind of depends on what wakes up the FOP beast as we like to call it the condition progresses in spurts these kids tend to go through a time period where there are a lot of flare-ups we're not really sure why there's some suspicion that hormonal events that happen during adolescence may be a trigger so Carly lives a little differently because it's difficult for her to be on her own right she's a young woman who would probably like her independence and the ability to get out and do things on her own and her disease doesn't allow her to do that they took 8 teeth out so I can get food through the holds as I like to call them um but it's definitely harder to catch you if there was a sport I was in it and I was the center of attention I just loved everything about being active so I remember my parents having to slow me down a lot they never treated me any different she was on the swim team she wasn't very good but she competed anyways and you know and everyone cheered her on it didn't matter it wasn't what it was about it was about her just being her [Music] so we are actually really lucky for such a rare disease we have a couple Mason doctors on the case you go and then I go and then my dad goes so the business is tragic I am ruining this I'm about to lose it right now this is actually so tragic it's stuck in there's drugs that will hopefully prevent bone from forming because of a flare-up that's the drug that Carly is on right now it's a clinical trial where we're at today at work versus where we were 15 years ago just amazing this is the piece of bone that is causing my jaw a lot which is why I have no movement and hopefully in the coming years with FOP treatment they will be able to remove that quart of bone giving me mobility back [Laughter] Carly went to three different colleges finally graduated from Maryville I went to Drury in Springfield Missouri sometimes Carly will like curl my hair for me and we decided to move in together not one was actually and stated by me she caught me off guard there we go I decided it was kind of the right time for me to venture out on my own while I still could we're hoping in the next two or three weeks to be moved in here there's no real modifications that we made in here we just are going to be careful about where we put the dishes and other things in the kitchen to be able to be in a level to where I can teach them so here we have the bathroom this we have to completely gut and then we also have a bench that I can sit on and also use to put shampoo and conditioner so that I storage it I'm pretty excited it's been a journey I'm just excited to get into my new home and see where my independence can take me but it will hinder me as well it's definitely disappointing that I can't play sports or drive a car or do this that or the other thing but I always try to look on the positive side and remember what I still have and I'm thankful for that [Music] you

Channel: undefined

Views: 8,078,037

Rating: 4.9472685 out of 5

Keywords: living, differently, turning, to stone, rare, disease, Fibrodysplasia ossificans progressiva, tendons, ligaments, turn into bone, life, real, true, story, documentary, bbc3, bbc 3, bbc three

Id: 5FtJzdk30B4

Length: 7min 57sec (477 seconds)

Published: Mon Apr 29 2019

Reddit Comments

[u/BlurryBigfoot74]

The worst thing about rare diseases is that there's no money in the cure or treatment.

[u/Dubsouthpaw]

So very sad poor woman.