Hey Doris,

My name is Brianna and I have something called Osteogenesis Imperfecta.  OI as it is called for short is always life threatening as it can cause severe bone breaks, repiratory and heart problems, and severe infections just to name a couple of the potential things.  Do I ever wish I could do everything I used to be able to do... NO... but that could simply be because I was born with OI.  I have had this my whole life, however I did not know until I was 18.  I think more the reason for it, is that you can't change what you don't control so why get upset or mad about it? This has always been my philosophy and it has served me well. I have had many major health problems ranging from a hole in my heart to hearing loss, to a life threatening infection, to severe bone breaks, to respiratory problems and throughout all of it, I have found it to be easier to deal with if I just accept that I can't change it so I may as well not get mad. My doctors have never really told me it will be ok if I take my medication, they have told me certain things may get better like when I had the infections, they told me they would get better with long term treatment with IV antibiotics, and when I have broken many bones they have told me they would hopefully heal with casts, However the catch-22 is that the reason for the break and for the infection still remains.... my OI. It causes all these problems and there is no cure. There aren't really even treatments. So being positive, talking to others with it, and trying to minimize breaks is all that can be done.

Hi My name is Jamie and I am 47 years old,been disable for 8 yrs.I have what is called FAILED BACK SYNDROME which means that there is NO HOPE of my back EVER GETTING BETTER.I have rods in the low back and bone grafts /screws in both my hips plus wire and screws in my right foot,I have whats called DROP FOOT,my foot will go down but not come up.I also have scoleiossis so I can't stand straight like most people.There is a small Tumor that floats in my spinal fluid at the base of my head where my neck starts.Then I was in an auto acccident and found out that all my upper back disc from c7-c3 are bulging and the one Dr.wanted to do surgery on it,but I talked to my back Dr.abiut it and he advised AGAINST IT!!!but he did recommend me to a Neuro Surgeon so we can see about if the tumor needs to come out or just be monitored.I also have terrible Tension and migrain headaches.and I live and care for my 75yr old father.We do the best we can.there are times when I hurt and can't do much then other times I can do things like house work,cook,and laundry.I just have to be very carefull to not over do things.I do get depressed at times,which I also take meds for.Then some days the pain isn't that bad or rather I cope with it better on some days.I also have apain pump implant that I have had for 3 yrs now before I got it all I did was stay in bed ir my recliner most of the time,was in a wheelchair and/or walker at all times.So I really try to just be GREATFUL for EVERYDAY I CAN GET UP AND TAKE A STEP,some days are harder than others but I thank God that I an NOT WORSE THAN I AM,I hope this helped you some,if you read my profile that will fill you in on more and you can see the ups and downs I have..Good Luck>>>>><<<<Jamie