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Kristal Nemeroff has a rare, genetic brittle bone disease called Osteogenesis Imperfecta or 'O.I.' She started coming to the NIH when she was eight months old and has continued in clinical research studies as a young adult. Now 26, Kristal talks with one of her NIH physicians, Dr. Scott Paul, about her disease, and how he helped her get into a vocational rehabilitation program and attend college to be a Registered Nurse.

Transcript

Kristal Nemeroff: About 6 months along in utero, they did an ultrasound on my mom and they saw that my femur was broken in utero and so that was pretty much the hallmark sign that I was going to have OI. And my parents, with their sense of humor, named me Kristal, because they knew I was going to be fragile like crystal.

Throughout my lifetime I have probably broken my femurs around 20 times, about 10 rodding surgeries and osteotomy surgeries of my femurs. Lots of other broken bones along the way, too, but didn’t really keep count.

Dr. Scott Paul: Remind me – because I don’t think when you were first looking for careers that nursing was your first choice – so there was a process of getting to that.

Kristal Nemeroff: There was, and I really loved music therapy and when I saw the classes, a lot of them were the same for music therapy as nursing: the anatomy and physiology and statistics. And once I got into the science, I fell in love with the science and I said well, you know, I think that I would make a really good nurse with the experience I’ve been through breaking all these bones, seeing good nurses and bad nurses and everybody in between, knowing how it feels to be the patient, which a lot of nurses don’t know how that feels. 

But I felt like I was hitting brick wall after brick wall and I was experiencing barriers to receiving my education that a lot of people with disabilities experience when they go and they try to get their education. And so my mother and I contacted you to write this letter…

Dr. Scott Paul: Do you think we should read this? And should you read it or should I read it?

Kristal Nemeroff: I’m going to cry, so I think that you should probably read it.

Dr. Scott Paul: So remind me who Diane Laubach was, the person I had to write this letter to. 

Kristal Nemeroff: She was in charge of Office of Vocational Rehab; she was responsible for my case. But this letter is the letter I also use when I was asked to give a letter of medical clearance for the nursing program. So it kind of opened two major doors for me.

Dr. Scott Paul: Before I read it, it references a letter and documents that she sent, if I recall, questioned whether or not you should be able to go to nursing school. Do you remember…

Kristal Nemeroff: Absolutely…

Dr. Scott Paul: …what they said?

Kristal Nemeroff: …there was doubt there with a brittle bone disease whether or not people thought I could be a good nurse. I think that that’s what it all was and it just seemed silly to anybody who knows me and knows how capable I am. I will find a way to do it. And it may not be the same way that other people do it, but I will find a way.

Dr. Scott Paul: Okay. 

Dear Ms. Laubach: I am Kristal’s physiatrist, rehabilitation physician at NIH. As a physician who specializes in the care of persons with disabilities, I am specifically qualified to address Kristal’s functional abilities. Based on my knowledge of Kristal’s condition and my review of the information that you forwarded to me, I can state that Kristal is medically cleared to participate in a college course of study leading to a degree as a Registered Nurse. Kristal unequivocally has the intelligence, motivation and compassion to excel in the nursing field.

Kristal Nemeroff: This was the most important letter of my life and back before I started nursing school, it didn’t really hit me, but I tell you, I found this letter about two or three weeks ago and I read it and I…I wept. It hit me in that moment all the doors that you opened for me because of that letter.

I got my RN BSN in 2011 and actually having a career that I love in nursing, I would not be a registered nurse if it wasn’t for you and the NIH and everybody here.

Dr. Scott Paul: Well, it’s pretty cool to sometimes find out that the things you do really worked.

Kristal Nemeroff: As a school nurse, that’s one of the things, too. It feels good when a child comes to you and said, “You really made a difference.” And the NIH really made a difference in my life.