I am an RN and I have Osetogenesis Imperfecta

Esme12, ASN, BSN, RN · Nov 21, 2011

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

mindlor · Nov 21, 2011

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

NightNurse876 · Nov 21, 2011

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

healthstar, BSN, RN · Nov 21, 2011

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

noahsmama · Nov 21, 2011

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.

**NickiLaughs, ADN, BSN, RN** · Nov 21, 2011

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. :)

bjaeram · Nov 21, 2011

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!

Dixielee, BSN, RN · Nov 21, 2011

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.

blueyesue · Nov 21, 2011

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.

healthstar, BSN, RN · Nov 22, 2011

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 :)

blueyesue · Nov 22, 2011

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.