As it stands above I have osteogenesis imperfecta, I am currently 15(M) and live in Germany (So I'm sorry for my bad English). I am also in a wheelchair because of my illness, I had over 40 broken bones and 79 hospital visits. My chest has deformed, I also have scoliosis (Surgery for my scoliosis is next year!) ama!

Comments: 246 • Responses: 67  • Date: 

WinterText106 karma

Are you able to attend school?

Skilliii196 karma

Yes, I go to a normal school .There is no school bus in Germany, Students must travel by public transport. Luckily I have a driver (paid by the state), but this is the only difference everything else is normal.

ellechimennyl15 karma

Which level of school do you go to? Gymi, Real, etc. I’m always curious what those with great brains but precarious health situations. What do you want to do when you are done? Do you miss a lot?

Skilliii19 karma

I go to Hauptschule, Unfortunately, even without broken bones I often miss (hospital appointments). I want to repeat my Abi after graduation, and then hopefully study history.

HelpfulRN100 karma

Are you in alot of pain?

Skilliii166 karma

No, I no longer feel so much pain in bone fractures, only my back hurts a lot due to my scoliosis

HelpfulRN83 karma

I am so sorry for your pain, I hope the doctors can help you.

Skilliii86 karma

Thank you for the lovely words, Unfortunately, there is not much the doctors can do. Next year I have my scoliosis surgery.

HelpfulRN33 karma

Good luck with your surgery! Let us know how it went :)

epicnding15 karma

Definitely want an update.

Skilliii35 karma

I will make an update after the operation in a year :)

WinterText90 karma

what is the weirdest way you've broken a bone? I know of this disease from the movie Unbreakable. I remember it is what Mr. Glass was afflicted with.

Skilliii153 karma

I broke my leg once in my wheelchair, I got stuck somewhere. I didn't realize for a week that I had broken a bone

tongshize75 karma

What recommendations would you have for medical personnel, when having a patient with osteogenesis imperfecta?

Skilliii111 karma

Look in his eyes, we have blue sclera.

tongshize46 karma

Actually, I meant what could be done to make the patients' experience better?

What could medical professionals do better for someone with your condition?

What would you like us to know?

Skilliii69 karma

Oh, I'm sorry. The disease develops differently in each, if a patient needs more help, he will probably tell you. In general, you can't say how to treat someone with this disease. Simply treat him like a normal person :) If you are a nurse, by the way, I want to thank you for your work!

YouMcFuckedup45 karma

I will always remember this condition for the fact that you develop blue sclera. I always thought it was super cool! (I'm sorry if that's insensitive at all).

Skilliii26 karma

Thank you! :)

shuki2514 karma

I’m a doctor. I remember meeting my first OI patient while I was in medical school, the first thing I noticed was her blue sclera, then I asked her if she has OI and she smiled and said how did you know? Hope your scoliosis surgery goes well and a success!

Skilliii8 karma

This makes us special in a way, thank you very much!

NaziHuntingInc57 karma

Other than being in a wheelchair, how different is your daily life compared to an average person? Also, other than very minor things, your English is pretty good

Skilliii112 karma

I always have to plan everything before I go anywhere, In Germany, not everything is accessible for the disabled, many stairs. It's not my illness that restricts me, it's the people.

NaziHuntingInc73 karma

Not fun. In the US, all buildings made since ‘90 must be handicapped accessible. It isn’t perfect, but it definitely helps a lot

Skilliii48 karma

Wow i didn't know that!

sternje35 karma

The intention of the law is good and noble. Unfortunately, it is frequently hijacked by unscrupulous lawyers who threaten to bring suits against small businesses that are somehow not in compliance; no ramp, no unisex handicap restroom, etc. and those bloodsuckers offer 5-figure settlements to not pursue action. Which any rightminded business owner is going to see is far cheaper than hiring a lawyer and fighting it. And the settlement money does not go to actual disabled people, it goes directly to the lawyer. And maybe he tosses a few hundred to the real handicapped person the suit is filed on behalf of. But this law is just too prone to abuse. Keep the law, get rid of the lawyers.

Skilliii57 karma

I have noticed that a lot of laws in America are poorly worded, they support the rich more than the poor.

MrCapedCrusader57 karma

Do they call you mr. glass?

Skilliii39 karma

Unfortunately not

MrCapedCrusader32 karma

I hope you can have a good life man

Skilliii29 karma

Thank you! :)

heeeymrtangerineman50 karma

Hey dude, my sister has OI too, not too sure which type though. She's turning 30 next year, travels around the world, has a stable job, good friends and all that. So how are you going with your treatment? Or are you doing any to strengthen the bones?

Skilliii55 karma

I am happy to listen that your sister is successful despite the illness! I am treated every 4 months in the hospital, I am given calcium by an infusion. Sometimes I do sports which also helps me a lot.

heeeymrtangerineman16 karma

Which sports do you play?

Skilliii41 karma

I like to swim, but most of the time I go to the gym

Neidrah5 karma

Don’t mean any disrespect but why do you use a wheelchair if you are able to do sports? Is it to reduce risks of injury?

Skilliii14 karma

It's even though I train very hard for me to walk, I exhaust very quickly. And, of course, to reduce the risk that i fall

Taurpion6 karma

Aredia?

Skilliii7 karma

Yes, I always forget the name.

zhuazhuanownow39 karma

hey, I have OI type 1. I have a couple of questions - elsewhere you said that you can't tell from your face that you have OI, does this mean that you don't have blue sclera (the whites of your eyes)? Also, I want to tell you that when I was about 15 or 16, I went on a drug trial in the UK to try and increase my bone density. The drug used was zoledronate, and as far as my doctors and I could tell, my bone density increased to normal levels. Is this something you have heard of?

Skilliii29 karma

Hello, I didn't know that on reddit others also have oi!. I have blue sclera, but not so conspicuous you have to pay attention to it to see it. I have never heard of this drug, the only drug I take is tobacco and cannabis. I would have to ask my doctor if something like this could help me.

damnletmein18 karma

Drug in dem Zusammenhang ist Medikament, nicht Droge. Den Namen des Medikamentes hat er/sie ja genannt. Ich hoffe, dass es schon ne Zulassung dafür in D gibt und es für Dich eventuell in Frage kommt.

Skilliii6 karma

Oh stimmt tut mir leid, wie gesagt mein Englisch ist nicht wirklich gut. Ich frage einfach mal mein Arzt fragen ob das für mich sinnvoll wäre.

prakash_265 karma

Do tobacco and cannabis help you or do you take them for recreation purpose?

Skilliii18 karma

I have a concentration weakness and cannabis helps me, it also helps with my back pain. I do not smoke Tobacco for medical reasons.

prakash_265 karma

I take it that you use tobacco for recreation purpose. Correct me if I'm wrong. Tobacco is very dangerous though for many body parts. I'd suggest you to leave it.

Skilliii15 karma

I'm slowly trying to quit smoking, it is extremely difficult. But I smoke less and less :)

Babe_Linco1n21 karma

Hi there! I currently teach a little girl in first grade with osteogenesis imperfecta. I'm a little concerned with how much she misses school and how she does not know all her letter names/sounds despite most of the class already moving on to reading simple books. I think this is partially due to so many missed days of school due to doctor's appointments and aching.

I wanted to know if you had any advice on how we can best support her from the early elementary teacher's side, and if you have any memories from when you were younger that might provide me with some insights.

Also, this unit, my class will be talking a lot about inner beauty, and we'll get to talk about things that make us unique. Do you have any kid-friendly resources about osteogenesis imperfecta that you might recommend?

Skilliii19 karma

Hello! :) Unfortunately, in my primary school it was also a problem that I was missing so many times. The best way to support them is through understanding, not to treat them differently. As a child, I found it very difficult to understand why I am so different, why other treat me different. So my tip would be treat her like a normal child and understand when she has difficulties at school. Unfortunately, I don't know any sources about OI. Best to write to the International Oi foundation [Email:[email protected] or fax:(301) 947-0456]

khaleesi201820 karma

Are your siblings affected? Did your parents know they were carriers for the disease?

Skilliii26 karma

I am a single child, The diagnosis was made a few months after I was born, So no one knew about my illness during pregnancy.

B00G13-W0ND3RL4ND16 karma

What do you like to do in your off time? And do you have plans for a future career or passion you want to pursue?

Skilliii28 karma

I love going out with my friends and just doing normal things. I don't have any plans for the future yet but I would like to study history.

imalivejustsoyouknow12 karma

Have you ever been a regular at a hospital. So do the doctors know you when you come in. If so are they nice and do you ever hear people talking trash about you?

Skilliii29 karma

I have always been in hospital since I was born, so I know every body. Yes most are very friendly, especially the nurses (I always leave a small gift for the nurses). I've never heard anyone talk badly about me in hospital.

wilster11711 karma

Wohin würdest du am liebsten reisen?

Skilliii15 karma

Amsterdam!

epicnding7 karma

That's not too far away from Germany! Depending on where you're at in the country. I'm sure you would have a ton of fun! :)

Skilliii6 karma

It is unfortunately about 6 hours away, but during the holidays I will probably go there with my friends! :)

shapeyoursmile5 karma

If I may (as a Dutch neighbor) - Amsterdam is cool, but it will be horror for you in a wheelchair due to shitty streets and so many people, you can't even see the actual city. Obviously you should follow your own dreams and I hope that you'll be able to visit one day, but if you wanna go for a Dutch city, I recommend Utrecht or Breda! They're closer, kinder, and easily accessible.

Skilliii1 karma

Thank you for the tip! I didn't know Amsterdam is so hard for wheelchair users.

ravenpotter310 karma

have you ever been discriminated against for being disabled?

Skilliii33 karma

A lot of people think I have no chance to fight back, and I would very easily break something. I go to fitness at least 3 times a week, and haven't broken bones for 2 years. But I haven't actually experienced anything else

Corrupt_Saint8 karma

Is dating hard and how so?

Skilliii28 karma

Unfortunately my body is deformed by my illness, it makes it much harder.

whywehere127 karma

What do you like to do ?

Skilliii12 karma

I make music, or rather rap. Nothing serious just a few texts for fun.

Technognomey2 karma

You should make a YouTube channel.

Skilliii2 karma

Would be far too strenuous for me ;)

hvgotcodes6 karma

Are you optimistic there might be some type of treatment in your lifetime?

Skilliii14 karma

Not really, if there was a cure at some point, it would probably be too late.

Serkys9 karma

If that turns out to be the case, I really hope you are able to make the most out of what you get. Judging by your other responses, you seem very optimistic. It's good that you can also appreciate the reality of your situation without fantasy or darkness. Please be well :)

Skilliii5 karma

Thank you for your kind words! :))

scottyboy2186 karma

Are you religious? Do you believe God made you this way for a reason?

(I'd normally never ask this question, but it's AMA!)

Skilliii33 karma

I am an alevite, I believe in Allah but not to the quran or Muhamed. I think everything happens for a reason, maybe my illness will get better or worse. At the end of the day, I can't change that, i can only hope. I have accepted my fate and try to be a good person, maybe one day I will be rewarded for it.

blackdynomitesnewbag4 karma

Have you seen the movie Unbreakable?

Skilliii6 karma

No, only split and glass

Leslie2174 karma

do you have a triangular face?

and are you afraid that when you have sex you will break a bone or 2 during the progress and screw it up?

Skilliii9 karma

I have a normal face, you couldn't tell on my face that I have osteogenesis imperfecta.

ShingleMalt4 karma

So, when do you break bones?

Skilliii2 karma

Can't you really say, maybe if I fall, I'll break something but maybe not.

ShiRonium4 karma

Can you sometimes have a laugh about the way you broke a bone?

Skilliii1 karma

Yes, for example, I broke my foot while swimming because I slipped, that was actually kind of funny

sgtxsarge3 karma

What do you do all day?

Skilliii5 karma

Most of the time I'm at school, after that I might do something with friends. After that I go home and rest and learn or play Video Games

TheMinecraftGod694 karma

what video games?

Skilliii2 karma

Sometimes GTA online and rdr2

intravenousmatcha3 karma

Would you have any advice to a person suffering with a tough situation in their life? I admire those with chronic painful conditions as many just keep going on with life as if nothing was wrong, while I cry and bitch at the drop of a hat. Also, just looked up the blue sclerae. Its visually beautiful, although I'm sure the underlying cause leaves nothing to be desired. Thank you for opening my eyes to the existance of this awful condition

Skilliii2 karma

Sometimes life is shit and pointless, but only for this moment, Everyone has bad times that's normal. Every broken bone was an experience for me, everything a person experiences, whether it's breaking a bone or something else, Is an experience so you don't make the mistake again. If you are in a bad situation, you can dm to me and talk with me about it

gator_feathers3 karma

Does your diet play a role in treatment? Like vitamin d or calcium supplements? Protein? Magnesium?

Skilliii2 karma

I don't really eat special, I eat what my mother cooks whether it contains a lot of vitamins or not

IOnlyReadItAtWork3 karma

How easy does your bones break? For example if someone were to punch you on your shoulder (in a friendly manner) but does it a bit rough, will you break the bones?

Skilliii4 karma

In such a situation I wouldn't break any bones. Sometimes I just have a gut feeling that a situation is too dangerous, but unfortunately I can't really estimate that.

Liberteez3 karma

Were your parents ever accused or suspected of child abuser because of your early presentation with fractures?

Skilliii3 karma

Not really as far as I know, After a few weeks after my birth my mother took me to the doctor because I always cried while changing nappies, and then the doctors have confirmed my illness.

Jao_R3 karma

Do you like comic books?

Skilliii2 karma

Not really, I'm more of the movie type.

didgeridude25173 karma

Are you working for M. Night Shayamalan?

Skilliii2 karma

Unfortunately I haven't been invited to any film by him yet ;)

AyyAway3 karma

How does Mass Effect make you feel?

Skilliii2 karma

It doesn't really change my feelings, you get used to the looks.

Gundamnitpete5 karma

I think what he means, is that in the game Mass Effect, the ace pilot of your ship also has Osteogenesis Imperfecta. He's also a really funny/witty character and is definitely a fan favorite.

If you haven't played the Mass Effect games, it's worth checking them out. They're really cool.

Skilliii2 karma

Oh, shit. Sorry, as I said my English is not so good yet

Monkeyfanboy3 karma

Can you take Cannabis? Can I send you some?

Skilliii4 karma

sometimes I smoke cannabis, but unfortunately it is not really legal in Germany ;)

Monkeyfanboy3 karma

Taking edibles are great for pain. CBD almost cures chronic pain.

Skilliii5 karma

It helps me, it is extremely expensive and difficult to obtain in the long run. Unfortunately, Germany has lagged quite behind in terms of cannabis.

SimonVanc3 karma

What do your friends and people around you treat you like?

Skilliii11 karma

My friends are normal to me, they always help me with stairs. I'm glad that i have them

d_extrum3 karma

Lieblings Stadt in Deutschland? Und ich hoffe das dir die Operation hilft!!!

Skilliii6 karma

Stuttgart, einfach wunderschön (abgesehen von den Baustellen) und die meisten sind auch extrem nett!

RamOmri2 karma

Dein Engels sprechen ist sehr gut (sorry for my bad German)

Whereabouts in Germany are you from?

Skilliii2 karma

Danke! :) I live in Stuttgart

realbassist2 karma

Isn't this what Mr. Glass has in Unbreakable? Also, cam you walk un aided?

Skilliii3 karma

Yes, but he has a very bad form of osteogenesis imperfecta. Unfortunately I can only walk short distances.

AlexMalikofficial2 karma

Hi, you have no possible breathing problems?

Skilliii1 karma

I have although I smoke and have scoliosis a very good lung according to the doctor.

m5online2 karma

Hello! Type 1 OI here. Do you have a family history of OI? My mom has it, my two sisters have it, and two nephews have it. My daughter has it as well. All hereditary. We happen to have very pronounced blue sclera in our family who has it. Broken about 30 times, so not to bad for type 1. Like you, over time you get very tolerant of the pain in breaks. I wouldn't say it hurts any less than anyone else, but you get used to it and build up a tolerance over the years. My last break I had bad spiral fracture of my left fibula, it hurt really really bad, but you just kind of shrug your shoulders and deal with it.

Skilliii1 karma

I am the only one with OI in my family, Doctors suspect a mutation, so I didn't inherit it. I can only agree with you with the pain, you get used to it, Sometimes I don't even notice broken bones and think they are muscle strains.

FluffHerStuff2 karma

Being that you're 15 you might not be able to answer this, but is sex possible with a condition like this?

And also, what do you do for enjoyment in your free time?

Skilliii1 karma

Sex is possible, only I have to be a bit careful that it doesn't get too hard. I love going out with my friends, it feels good to do normal things.

uneLeDlairC2 karma

Doyou fear breaking a bone too much? Or are you more used to it. I'm sorry if i felt insensitive, really.

Skilliii1 karma

I'm not afraid of broken bones, in the end it will heal anyway.

MTROYALMAN2 karma

I think that you are amazingly strong to be able to deal with what you have been given to deal with. How do you look at life in terms of suffering? How do you deal with the unfairness of life that we all experience? do you believe in God?

Skilliii2 karma

Every pain I feel just makes me more resistant to it, Every bone fracture will heal. If I'm mentally on the ground, it can only get better. Unfortunately, this world is also unfair, many are selfish and do not think of their fellow human beings, But that doesn't mean I have to be the same as they are, i can even do better than them. I am an alevite, I believe in Allah but not to the quran or Muhamed.

rchlnpls1 karma

I’ve read femurs are the thickest/toughest bones to break. Are either of your femurs one of the bones you’ve broken before?

TheMinecraftGod692 karma

femurs are the hardest bones to break and also some of the most painful. Just clarifying for u.

rchlnpls1 karma

Yes that is what I’ve heard and OI type 3 is the most severe so I’m wondering if it’s gotten so bad to the point of breaking the hardest bone, that would be wild!

Skilliii1 karma

Luckily, it never happened. I would also like to correct you, the worst form of OI is probably type 8, I'm lucky compared to others pretty normal.

TheMinecraftGod691 karma

Can they fix your various breaks and fractures or are they unable to without risk of causing more damage/ It's easier just to leave them broken? And what is the most painful break you have ever had?

Skilliii2 karma

My bone is just being put up and after that for a few weeks I have to wear a plaster

fist0031 karma

So you're the next Mr Glass?

Skilliii2 karma

I hope so