Neurodegeneration with Brain Iron Accumulation (NBIA) Community

Learn how others live with Neurodegeneration with Brain Iron Accumulation (NBIA) and share your story

Brother, sister cope with NBIA as active, happy young adults

Brother, sister cope with NBIA as active, happy young adults

by RareConnect team published 9 months ago

by Melissa C. Looking back, there were signs that my brother, Brian, and I were heading to a medical crisis. But no one thought of NBIA (Neurodegeneration with Brain Iron Accumulation) when we were kids. We wouldn’t know those words until much later.

I remember when we were growing up that Brian fell a lot. He also stuttered and went to speech therapy. As soon as he would stop the speech th...

JUAN DIEGO A PATIENT WITH PKAN2

JUAN DIEGO A PATIENT WITH PKAN2

by berthamarlensiabatocely published 10 months ago

My son, has PKAN2 disease, and suffers from generalized dystonia. he is treated with a baclofen pump and other medicines and besides those treatments he is still with dystonia now in the lower jaw. I want to keep him from suffering. I noticed that the boy had some problems when he was one year old. I took him to a neurologist and he was diagnosed with psychomotor delays. This diagnosis lasted u...

Francisco, living with PKAN2

Francisco, living with PKAN2

by antonioguarda published over 2 years ago

I'm from Portugal (Leiria). My son is 6 ½ years old and we live with the same disease. Apparently he is not in pain, but he has lost almost all mobility. I want to exchange experiences and eventually do tests to find ways to improve quality of life. Francisco is being monitored at the Pediatric Hospital of Coimbra (Portugal) and the University Clinic of Navarra (Pamplona).

Jeremy from Texas

Jeremy from Texas

by MARCYG published over 2 years ago

Jeremy, 7 years old. 2nd grader.
Loves school, watching SpongeBob, playing ball, computer games, and playing outside. Jeremy was recently diagnosed with NBIA - PKAN. I have learned a lot in just a few months. He was diagnosed April 2014. He is our first born grandson and I have cared for him since he was born. Jeremy was born normal and as he grew we started noticing some things he couldn�...

Living with PKAN in Italy

Living with PKAN in Italy

by carladidio published over 3 years ago

How I found out that I had PKAN, Pantothenate Kinase-Associated Neurodegeneration, and how I'm coping Hello everyone, my name is Carla, I was born and I live in Milan and I was diagnosed with NBIA, specifically PKAN. The first symptoms began at age 6, I started limping with one foot. I could no longer hold various objects in my hand. At 9 years old, I had an operation on my foot, stretchin...

NBIA Disorders Association

by NBIA Disorders Association published over 3 years ago


For more videos: http://www.youtube.com/nbiadisorders

NBIA Miracle Video

by NBIA Alliance published over 4 years ago


To see more videos from the NBIA Alliance, visit:

http://www.youtube.com/nbiadisorders
The video contains photos from the 2009 NBIA Disorders Association Family Conference.

The 2013 conference was held in San Antonio, Texas on April 3-7, 2013. Our NBIADA Facebook page is at https://www.facebook.com/NBIADisorders and we have pictures from the family conference posted there and oth...