I have osteogenesis imperfecta type 3 ama

Are you able to attend school?

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.

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?

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.

Are you in alot of pain?

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

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

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

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

Definitely want an update.

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

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.

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

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

Look in his eyes, we have blue sclera.

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?

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!

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).

Thank you! :)

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!

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

Do they call you mr. glass?

Unfortunately not

I hope you can have a good life man

Thank you! :)

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

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.

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

Wow i didn't know that!

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.

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

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?

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.

Which sports do you play?

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

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?

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

Aredia?

Yes, I always forget the name.

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?

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.

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.

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.

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

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

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.

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

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?

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:bonelink@oif.org or fax:(301) 947-0456]

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

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.

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?

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.

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?

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.

Wohin würdest du am liebsten reisen?

Amsterdam!

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! :)

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

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.

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

have you ever been discriminated against for being disabled?

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

Is dating hard and how so?

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

What do you like to do ?

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

You should make a YouTube channel.

Would be far too strenuous for me ;)

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!)

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.

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

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

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 :)

Thank you for your kind words! :))

Have you seen the movie Unbreakable?

No, only split and glass

So, when do you break bones?

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

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?

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

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

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

Can you take Cannabis? Can I send you some?

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

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

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.

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

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

Are you working for M. Night Shayamalan?

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

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

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

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

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

What do you do all day?

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

what video games?

Sometimes GTA online and rdr2

How does Mass Effect make you feel?

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

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.

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

Do you like comic books?

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

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

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.

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?

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.

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

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

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

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

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

Whereabouts in Germany are you from?

Danke! :) I live in Stuttgart

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

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

Hi, you have no possible breathing problems?

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

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?

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.

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.

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.

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?

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.

So you're the next Mr Glass?

I hope so

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?

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

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

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

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!

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.