Osteogenesis Imperfecta Tarda

There is really no topic just questions: (Sorry if this is the wrong forum)

I have this disease and I am 24 years old the visible symptoms that I have
are a thinning of the bones,blue sclera in my eyes & a barrel chest. I have
known little about my condition since birth but have had 20+ broken bones
but have not broken anything signifigant (Toes/small foot fracture) in 5 years.
My question is that I am slightly overweight im about 175pds and I am only
5'7 but I do work out (Lift weights,Martial Arts etc) which ads to my weight
through muscle. But I am having issues such as.. they say I have osteopo-
rosis in my spine & ive always had an awkward walk I kind of sway back
and forth (Feet kind of stick outward).

questions:

1. How long is my life expectency & should I worry about being wheel
chair prone later in life?

2. I broke my right hip at 14yrs old & I have problems (Pain) when I am
on my feet to long & it (pain) is beginning to effect my left hip as well
which was never broken & I experience pain in my ankles as well and
I am affraid to ask my doctor for pain (Narcotics) because frankly I do
not like taking them (And don't want to seem like well a junky cause
for some reason she seems oblivious to my condition as far as what
she knows I complained once & I was told to take mobic or aleve), but
at the  same time sometimes it is needed so how would I go about
getting on some kind of pain management? it's hard for me to say
"Give me some pain killers please??"


3. I have had numerous extreme breaks and forgive my language but I
am no ***** & like to think I can handle pain better then most do to
instances like seeing my own wrist bone sticking out of my arm etc &
having my family cry at the sight more then me, it's just sometimes I
can't take a handfull of aleve cause it's not good on the stomach so is
there something I can do for this pain....whatever it is I will try im getting
older & starting to feel 44 instead of 24.

4. Is my condidtion (Imperfecta Tarda) the least harmfull form?

lastly: are there any advances being made because I feel
like a medical outcast or red headed step child the most
I get out of doctors is them asking me if there interns and
or students if they can all pile in the room & look at my
eyes I feel like my problem is insignifigant and it is very
annoying/hurtfull sometimes....like nobody understands
or cares about a cure or even undertanding this thing!!!!!

THANK YOU PLEASE OFFER SOME ADVICE IF POSSIBLE

[Caliber2005]

Hi,
How are you feeling now?
Osteogenesis imperfecta is a genetic bone disorder. People with OI are born without the proper protein (collagen), or the ability to make it, usually because of a deficiency of Type-I collagen. People with OI either have less collagen than normal or the quality is poorer than normal. As collagen is an important protein in bone structure, this impairment causes those with the condition to have weak or fragile bones.
OI tarda is compatible with life, but they are prone to wheel chair to avoid risk factor for fracture.
I think you should see a pain management specialist.
Yes your condition is least harmful form, the one which is compatible with life.
Bye.

[Godofredo MD]

Hi.

Osteogenesis imperfecta tarda is also called type I OI.  It is the mildest form of the disorder and life expectancy can be comparable to the normal population.  As long as your condition is properly managed, you can live a normal and decent life.

Asking for pain medication when there is the presence of pain is never "being a junkie". It is important for your physician to learn of the presence of pain so that it can be effectively managed. There really is no "best" way to ask for pain killers than to ask for them.  There are other non-opioid pain medications and these may be appropriate for your condition.  Consult your doctor regarding this.

Conservative treatment and proper physical therapy can help alleviate the pain.  There are also reports that TENS is useful for the pain.  Talk to your doctor regarding this.

Earlier this year, researchers have discovered a new gene, known as cartilage-associated protein or CRTAP, that when mutated likely prevents fully functional collagen from forming. This gene has been linked to the development of osteogenesis imperfecta.

It is unfortunate that you have been afflicted by this condition. I do hope your condition will not worsen as time goes on.