-
SHARE
Categories
- Acute Respiratory Distress Syndrome
- Anoxic Brain Injury
- Asperger's syndrome
- Autism
- Autism Spectrum Disorder
- Cerebral Palsy
- Concussion
- Developmental Disabilities
- Down Syndrome
- Duchenne Muscular Dystrophy
- Foster Care
- Genetic Disorder
- Hemiparesis
- Hypotonia
- Intellectual Disability
- Learning Disability
- Miscellaneous
- Osteogenesis Imperfecta (OI)
- Pectus Excavatum
- Pediatric Feeding Disorder
- Prematurity
- Spina Bifida
- Spinal Cord Injury
- Spinal Muscular Atrophy
- Transverse Myelitis
- Traumatic Brain Injury
- Uncategorized
Twitter
-
Recent Posts
Recent Comments
- Jennifer Silvestri on The Reality of Hope
- Faye hammock on The Reality of Hope
- Lily's Mom on Twelve Hours
- Lisa on Twelve Hours
- Kerry, RN on Twelve Hours
Archives
Institute Links
Tag Archives: Osteogenesis Imperfecta
Beyond Limitations
In Rosalind Chen’s home country of Taiwan, Osteogenesis Imperfecta (OI)—commonly referred to as brittle bone disease—is so rare that some physicians haven’t even heard of it, let alone been properly trained to diagnose and treat it. Consequently, the disease—which not only causes extremely short stature in patients, but also makes them highly susceptible to broken bones—has only recently gained attention there.
Rosalind herself has a severe form of OI. Aside from having brittle bones, her height limits her ability to move around and she uses two crutches to improve mobility. She is always at risk for a fracture should she stumble or have an accident. But she doesn’t let that stop her from living a full and active life.
I first met Rosalind earlier this year, when I traveled to Taipei, Taiwan, to attend and speak at a conference that she had organized to in hopes of spreading awareness about brittle bone disease and promoting better care for patients like herself in Southeast Asia. Since meeting her, I have been amazed at her complete mobility and her ability to interact with others. It’s as if she has no disability.
Continue reading
Posted in Miscellaneous, Osteogenesis Imperfecta (OI)
Tagged brittle bone disease, developmental disabilities, Kennedy Krieger Institute, Osteogenesis Imperfecta
Comments Off