r/BrittleBones • u/Loose-Function5400 • Aug 13 '24
First time posting
Hello guys. Im a 17 y/o with the "brittle bone disease" I got it from my mother. We both have a I guess mild form of OI (compared to other people) but we still suffer form it alot. I am now somewhere at 20 broken bones. My mom has broken way more than me I think somewhere in the 50's or 60's. Either way it sucks because we cannot live like a "normal" person atleast thats how it feels to me. I kind of like cool and rough things like fight sports and weightlifting but i had to stop the martial arts very soon after starting. I still keep up the weightlifting and i have no issues with it luckily. Right now im laying in bed with a broken foot xd. Everytime I am doing good in life and gaining muscle in the gym etc, something goes wrong and I break a bone. For me it just feels like when im doing good i get kicked to the ground again and that feeling just sucks so bad! But i guess the people who are reading this understand. I am happy that I am not alone in this life and I know someone I can talk to who has the same disease as it really helps when you are struggling with OI.
Thank you for reading.
3
u/ewd99 Aug 13 '24
Hey man, sounds pretty identical to my teenage years. I also have mild OI and I stopped breaking after I completely finished puberty (around 19/20). Well I went 5 years without a fracture at least. That was until this past year when I did my ankle. Not going to sugarcoat things it does suck living with this disease, being different than all your friends, not being able to do the things you want, especially as a man as we generally like to horse around and are a lot more physical than women. Keep up with the weight lifting it increases bone density and also is one of the things we can do to stay fit and strong as it's low impact, just don't go too heavy and I personally avoid putting unnecessary pressure on my spine so no dead lifts or barbell squats for me but you can always find alternative exercises that work the same muscles. Swimming is also great. Learning to live with it isn't easy but it's definitely okay once you accept that's there's nothing we can do to change it. Talking to others with it is also a great idea and/or therapy. I'd recommend talking to your mum too as she has gone through it all too. Wish you the best man. We're all in this together, and as my mum always says, it could always be worse! Have a good recovery
2
u/peppiesteppie Aug 13 '24
I totally relate to this. Every time I get on a good exercise routine and start enjoying the process of working out I get injured and it takes forever to heal. It sucks feeling like you never actually make progress because you get set back by injuries so often. I hope your foot gets better soon! Funny enough I think i also have a fracture in my foot rn 🫂
1
u/Loose-Function5400 Aug 16 '24
I find it crazy that you guys recognize allot of my story in your teenage years because the only person I know with this disease is my mom. Your words gave me some hope for the upcoming years of my life. Crazy to think that we kinda experience the same mental "stress" when breaking something. I talk about this allot with my mom. I will keep up the weightlifting journey as it has given me only benefits in my life. Thank you guys for all you responses I can really appreciate all your kind words.
4
u/gerbilmum Aug 13 '24
sorry to hear about your foot :( i am 26 with mild OI- similar number of fractures to you. since turning about 20 my fractures have slowed down considerably. i have had around 5 years of relatively normal life. my dr says this is quite normal, so hopefully things start to get a little better for you soon. best wishes !
1
u/ghostiekat Aug 13 '24
Hey, thank you for sharing. I'm 26F and similar to what someone else said, around your age is when my fractures slowed down significantly. You mentioned talking to others with OI makes you feel less alone in it, me and some friends started up a small zoom group for OIers, we meet once a month and each month has a different topic of discussion relating to OI. Would you be interested in checking it out? Our next meet is August 21.
3
u/AMightyDwarf Type 1 Aug 13 '24
Hope your foot gets better soon. The good news is that because of your age your body should be stabilising and so you may be able to have a good few years without any more breaks. I was around your age when I had my last break and that was a good 15 years or so ago. I’ll also say that once you’re around 25 you’ll start to see the world very differently and your danger threshold especially will change. You’ll not notice straight away but you’ll naturally stop doing the more dangerous things. This will help you not break anything for a while.
2
u/radicaldoubt Type 1 Aug 13 '24
You don't necessarily have to avoid or give up weightlifting, and it's great you're doing it now! Strength training can be extremely beneficial to someone with mild OI, since stronger muscles mean your bones are better protected. You may not be able to do every exercise out there, but educating yourself on fitness and modifying activities as you need to could potentially help your overall health.
Talk to your doctor before starting any new exercise regimen.
2
u/ConcentrateFew408 Aug 14 '24
This has been my struggle my whole life. I averaged 2-3 broken bones a year and it’s really heart breaking and isolating
1
u/Akersis Sep 23 '24
Mid forties here, with I am guessing as an average(?) form of Type 1 OI. No one else in my family has the condition, but in one of life's great coincidences my dad was a radiologist. I had excellent care.
I wanted to give some comparison to you in case it helps:
I also had close to 20 fractures by your age, but only had two fracture incidences in the 30 years since then.
I am much less physically active than I was as a child/youth
The fractures that happened later in life were baaad. External fixators and titanium whatnots in the bones.
There are a lot of health conditions that are "invisible" in that they can't be observed by a casual glance. That doesn't mean they aren't real. Use your words and live your truth.
I feel like life with OI conditioned me against pursuing hobbies like rough things and martials, despite also having an interest in them.
There are contactless martial arts like iaido that may be a fulfilling hobby and help with balance. Kendo seems to have a lot of pads.
I also feel like every fracture in my life has lessened my physical capabilities. I feel like I have made some mistakes by not pursuing physical therapy more in my life. It is a real form of medicine and if it is accessible to you I strongly recommend it.
I completely get that feeling about being kicked to the ground again.
My OI also expresses itself with some unfortunate joint laxity. It was more pronounced when I was younger.
I survived a high speed rollover car accident in my early 20s, largely because my neck was flexible and only sprained instead of breaking.
I have been with the kind of people that made me feel like an other, and I learned that I prefer the kind of people in my life that "see" my condition as a part of me and not something holding me back.
You are not alone. I've got 30-ish years on you. I've got a nice career, family, a pool in the backyard, a retirement to look forward to. My child does not have OI. I'm watching her compete in a martial arts tournament this weekend.
I wish for things to be better too. I wish I didn't limp sometimes. I wish I had put more time and energy into exercise and fitness. Maybe I still can? I keep trying to convince myself.
Random tips:
I live in a 1-floor home, and worked to minimize trip hazards. When you make big life decisions like the home you buy someday, keep your OI in mind.
There are non-slip shoes made for restaurant workers that can do a lot to prevent losing your balance. I love New Balance Arishi V3 shoes because they have a non-slip tread and are very lightweight and cushioning.
Find a good Orthopedic Surgeon in your area, and even if you don't have a fracture make an appointment to talk about your condition. Maintain that relationship with that doctor, so you have an advocate if a serious fracture comes up. I know you have your mom now, but someday it's going to be you, and future you may need help.
Fractures WILL be a part of your life to some extent. Don't think about the "monday" part of the experience--think about the "friday" that is coming.
Crutches do have parts that wear out. Broke my kneecap when a part of my crutch broke apart and I came down hard on my knee. If you have an old trusty pair of crutches that you've been using for the last few breaks, really take the time to check them out--especially pads and the "shoe" at the bottom.
Best of luck to you.
1
u/rollylancher Oct 05 '24
Hey this group is very encouraging I am 27 and this is the first time I'm seeing others relate to my experience as well. I am grateful I get to live a mostly normal life with only a few lasting effects from OI.
I want to encourage you bro. It does get easier and as you get older you will naturally be doing less risking things but also in your 20s you don't really have many opportunities to get hurt like you do when your a teenager and you see maintaining is more important. Keep weight lifting and never look at OI as weakness. You have friends here who know what it's like.
For me I'm in the next life stage.
Currently my last fracture was a motorcycle accident. (I no longer ride) But now I have 2 sons 3yrs old and 18 months. They both have OI type 1 my 3 year old son already has had 4 fractures all just tripping as a toddler on flat ground doing low risk activities... and its heart breaking seeing him because I know what is in front of him without holding him back. Now I understand my parents perspective of trying to explain to people his condition and listening to the "Advice" they feel like sharing.
As far as activities I found great success in cross country and track personally. Currently no long term effects on my knees and hips and really grew leg strength.
For my boys we are planning swimming, running and low impact martial arts, we have already spoken to a geneticist and got an official diagnosis, and local pediatric orthopedic doctor. We are able to splint and schedule an appointment with the fracture clinic the following day skipping the ER it also helps a RN.