Caregiver Guide
OI, Collagen, and Skin Fragility
A. Things for a caregiver to look for based on the research summarized in the source document
OI,and.the.skin.main idea:
Frequent bruises with little or no known injury
Skin that looks thin, shiny, or translucent
Skin that marks easily from pressure, tape, clothing seams, or medical devices
Slow fading of bruises or marks
Small cuts that seem to look “worse” than expected
Reports of skin feeling fragile, sore, or overly sensitive
B. Signs of change or worsening
Watch for patterns or escalation:
Bruising increasing in size, frequency, or severity
Skin tears or breakdown from minor bumps
New sensitivity to adhesives, bandages, or medical tape
Skin that feels weaker or “stretchier” than before
Delayed healing compared to the person’s normal baseline
C. What to say to the doctor
Use clear, medical framing:
“My family member has Osteogenesis Imperfecta, which is a connective tissue disorder. We are seeing skin changes that match what research shows about abnormal collagen in OI, including easy bruising, thinning, and fragility. This is affecting daily life and medical care.”
You may also say:
“We are not just seeing cosmetic changes. We are concerned about blood vessel support, tissue fragility, and injury risk related to collagen changes.”
D. What to ask the doctor for
Referrals
Dermatologist (connective tissue–aware)
Geneticist or metabolic bone specialist
Physical therapist familiar with connective tissue disorders
Clinical considerations
Review of collagen-related complications
Guidance on safe adhesives and wound care
Documentation that skin fragility is part of the OI diagnosis
Monitoring tools
Baseline skin evaluation
Photographic tracking of bruising or skin changes
Review of medications that may worsen bruising
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