I am an RN and I have Osetogenesis Imperfecta

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Specializes in Utilization Management; Case Management.

Its funny when I am at work and I say to a MD, "I have OI." and they say "...and ur a NURSE?!" OI is not necessarily a death sentence. Yes OI plagues my family but we have type I, so we have normal height (I'm 5' 4 1/2", my dad who also has OI is 5' 11") and relatively few fractures (I've had roughly 15-20, I've heard of babies days old with fxs in the 50's). I've been looking for persons like myself, who are active, would love to be more active and are in search of information. There isn't a lot out there in terms of information and as health care professionals we have to create this body of knowledge, especially since we have first hand experience. Any information about personal experiences whether it be a patient you have cared for our your own family member. Let's help build the knowledge base to help people who are affected and the OI babies that are yet to come! :nurse:

Osteogenesis Imperfecta (OI) is a genetic bone disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.” The term literally means “bone that is imperfectly made from the beginning of life.” A person is born with this disorder and is affected throughout his or her life time.

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Specializes in Critical Care, ED, Cath lab, CTPAC,Trauma.

I too am a sufferer of a rare disorder but mine is auto-immune. It is difficult to get information with rare disorders. I had to look up OI as in 33 years of nursing I hvae not cared for someone with this disorder. May you continue in your health!!!

Osteogenesis Imperfecta (OI) is a genetic bone disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.” The term literally means “bone that is imperfectly made from the beginning of life.” A person is born with this disorder and is affected throughout his or her life time.

http://www.oif.org/site/PageServer?pagename=AOI_AboutOI

https://www.google.com/#hl=en&cp=7&gs_id=p&xhr=t&q=osteogenesis+imperfecta&tok=zKfgSFZyzUuq-Ut0tR6idA&pf=p&sclient=psy-ab&site=&source=hp&pbx=1&oq=osteoge&aq=0&aqi=g4&aql=&gs_sm=&gs_upl=&bav=on.2,or.r_gc.r_pw.,cf.osb&fp=b0360b2bd6c80cf0&biw=1228&bih=602

http://www.oif.org/site/PageServer

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Love it when I see people who are able to overcome rather than wallow in self pity....good for you both.

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Specializes in Utilization Management; Case Management.
I too am a sufferer of a rare disorder but mine is auto-immune. It is difficult to get information with rare disorders. I had to look up OI as in 33 years of nursing I hvae not cared for someone with this disorder. May you continue in your health!!!

Osteogenesis Imperfecta (OI) is a genetic bone disorder characterized by fragile bones that break easily. It is also known as "brittle bone disease." The term literally means "bone that is imperfectly made from the beginning of life." A person is born with this disorder and is affected throughout his or her life time.

http://www.oif.org/site/PageServer?pagename=AOI_AboutOI

https://www.google.com/#hl=en&cp=7&gs_id=p&xhr=t&q=osteogenesis+imperfecta&tok=zKfgSFZyzUuq-Ut0tR6idA&pf=p&sclient=psy-ab&site=&source=hp&pbx=1&oq=osteoge&aq=0&aqi=g4&aql=&gs_sm=&gs_upl=&bav=on.2,or.r_gc.r_pw.,cf.osb&fp=b0360b2bd6c80cf0&biw=1228&bih=602

http://www.oif.org/site/PageServer

Thanks, I added the OI description to my post. Bless you to no ened, 33 years of nursing> I hope Iwill be able to continue to care for my patients in critical care and eventually open a wellness center to teach people how to LIVE, rare diseases or not...nowadays people dont have that basic knowledge. Yes it will reduce hospital admission etc so ess nursing jobs for all but hey, I'd rather prevent and issue than fix it...even though I love my role in fixing people :redpinkhe

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When I saw the title of this thread, I was like what?! People with oi can work or become a nurse?! I only thought this bc my instructor said they cannot live a normal life, wow so wrong.

Anyways, I had a 24 month patient who had OI type 2. I will never forget that child, never heard about it before until I was assigned to this pt and I spent hours reading about it when i got home. Very interesting disorder, I love reading about it. I hope they can come up with a cure.

Hugs

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Specializes in pediatrics, public health.
When I saw the title of this thread, I was like what?! People with oi can work or become a nurse?! I only thought this bc my instructor said they cannot live a normal life, wow so wrong.

Anyways, I had a 24 month patient who had OI type 2. I will never forget that child, never heard about it before until I was assigned to this pt and I spent hours reading about it when i got home. Very interesting disorder, I love reading about it. I hope they can come up with a cure.

Hugs

Whether a person with OI can live a normal life or not depends on the type of OI. The OP has Type 1, which is the mildest type. Type 2 is the most severe type. So, I believe what your instructor told you was not wrong for the patient you were working with at the time.

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Specializes in Emergency, Trauma, Critical Care.

Congrats on not letting something that is part of you completely define you!!!!

I was born with seven holes in my heart 3 ASDs, 4 VSDs, a TE fistula, and a couple other disorders. I had five surgeries before age 2, happy to say last surgery was removal of a colostomy. I am very luck to not have the problems I had as a child affect me as an adult. I think those of us who were born with health problems as babies only makes us more sympathetic to our patients as adults. :)

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Specializes in OB, ER.

My brother has OI. He is short, about 5'2. He had several broken bones as a kid, his femur 3 or 4 times. However after puberty it got better which does often happen. Since puberty he has only had minor broken bones. He is a productive person, job, car, house, married, ect. You don't hear of people with it often!

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Specializes in ER.

We had a family of kids with OI who frequented an ER where I worked. All of these kids were very active kids who played baseball and soccer. We got to know the whole family of great kids! That was 20 years ago and I would like to know how they are doing. Obviously they had a relatively mild kind, but it sure didn't seem to slow them down.

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Hi Nightnurse. I am a nursing student with OI type 1. I have been in 2 bodycasts, broken my skull, collarbone twice, arms, more legs etc. My 10 year old daughter has it as well and has broken 10 bones so far.

Thanks for this thread.

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Whether a person with OI can live a normal life or not depends on the type of OI. The OP has Type 1, which is the mildest type. Type 2 is the most severe type. So, I believe what your instructor told you was not wrong for the patient you were working with at the time.

Thank you :)

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Often people will ask if either my daughter or I take calcium supplements. However, calcium does not help as the problem is with the collagen in the bones and tissues. There are some doctors that believe Vitamin C could help with OI.

A sign of OI is blue sclera. (The whites of the eyes are blue.) Also, our skin can be somewhat transparent.

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