Impact of Disorder/Injury and 3D-printed AT Presentation

Transcript

1. OTD 8244 – INNOVATIONS AND TECHNOLOGY IN CONTEMPORARY OT ASSIGNMENT #2 CASE PRESENTATIONS Group 5 DR. YU HSIANG LIANG-PAULTRE OTD, OTR/L, CKTP, CSRS, ASSISTANT PROFESSOR NSU – TAMPA BAY REGIONAL CAMPUS ENTRY-LEVEL DOCTORATE OF OCCUPATIONAL THERAPY PROGRAM
2. OTD 8244: OTD 8244 – INNOVATIONS AND TECHNOLOGY IN CONTEMPORARY OT GROUP 5: Leah Centonze, Jasmine Gabriel, Destiny Harris, Louanna Louis-Jeune & Emma Moore June 8, 2025 Freyja Haraldsdóttir (Visir, 2023)
3. Freyja Haraldsdóttir, Osteogenesis Imperfecta (OI) • Freyja Haraldsdóttir is an Icelandic politician, disability rights advocate, and adjunct professor at the University of Iceland as her work has significantly influenced discussions on disability, gender, and social justice in Iceland. • Date of Birth: June 27, 1986, Age: 38, Nationality: Icelandic, Gender: Female • Family/social support system: Has a loving and supportive family. In 1997, her family relocated to Nelson, New Zealand, to provide her with better educational opportunities. • Fun Facts • Co-Founder of the company Tabu • Currently pursuing a PhD focusing on disabled motherhood and societal perceptions in Iceland • She's a blogger: She shares her experiences and thoughts on her blog, "The Wheeling of Shame and Resistance," • Age of diagnoses/how injury occurred: Born with osteogenesis imperfecta, a condition characterized by brittle bones. (The wheeling of shame and resistance, 2020)
4. Primary Diagnosis: Osteogenesis Imperfecta (OI) Body Functions & Structures Affected Impact of Impairment on Activities: Skeletal Function- s.770, d.410, B.7710 People with OI have weak and brittle bones that can break easily, even with little or no injury. Frequent fractures and poor bone growth can lead to bone deformities and short stature. This can affect how they move, grow, and do everyday tasks, often requiring additional support or adjustments. Connective Tissue Function- s.770 People with OI often have underactive Type I collagen, a key protein in bones, skin, and tendons. This weakens the body's support structures, leading to fragile bones, loose joints, and stretchy skin, which can make any form of physical activities harder and increase the risk of injury. Muscle Strength- s.770, d.430, B.730 People with OI may have muscle weakness, often caused by reduced physical activity or problems with connective tissues. This can make it harder to do tasks that need strength or endurance, such as walking, lifting, and additional activities of daily living. ICF Browser (who.int) (Johns Hopkins Medicine, n.d.)
5. Freyja & Osteogenesis Imperfecta (OI) Activity/Participation Areas Affected Impact of Impairment on Performance Areas d4. Functional Mobility • OI causes bone fragility and reduced mobility • Uses a positioning device with assistance • Dependent on equipment and caregiver support d5. Self-Care • Tasks like hygiene and dressing impacted • Needs assistance with daily routines • Advocates for personal assistance d6. Domestic Life • Limited in managing household tasks • Mobility challenges affect independence • Requires support or modifications d7. Interpersonal Interactions & Relationships • Proficient in communication and public speaking • Uses assistive tech effectively for social connection • May still face attitudinal barriers in some settings d8. Major Life Areas • Educated and professionally active • Faces systemic barriers despite success • Access and equity remain concerns d9. Community, Social & Civic Life • Active in advocacy and public life • Still encounters attitudinal barriers • Inclusion in community life is key (World Health Organization, 2001)
6. Impact of Osteogenesis Imperfecta • Adaptation came easy for Freyja and finding ways to navigate a different way of existing felt mundane to her • Living in a ‘liminal’ space where there is limited knowledge of how long she would live for • This impacts life planning, particularly having a family • Feeling isolated and connecting with other people with disabilities • Types of assistive equipment used to manage these impairments • Contoured foam mattresses • Seating supports • Temperature regulation technologies • Wheelchair mobility devices • Positioning bed
7. ADDITIONAL INFO REGARDING Osteogenesis Imperfecta (Brittle Bone Disease) Type 1 • Most common form of OI. called classic non-deforming osteogenesis imperfecta with blue sclerae. • This causes people to break bones easier than others, but normally happens before puberty Type 2 • This is the most serious form. • Causes severe complications, like underdeveloped lungs, serious bone deformities and multiple broken bones before birth. Babies often die at or shortly after birth. • It’s also known as perinatally lethal osteogenesis imperfecta. Type 3 • This is the most serious type that survives past birth. • Causes severe bone deformities, making bones very fragile and easily breakable, and leading to physical disabilities. Type 4 • More severe than type 1, but less severe than type 3. • This is the mild or moderate form of OI. Causes fragile bones, but not easily broken. • OI is cause by mutations in the COL1A1 or COL1A2 genes in most cases. This may be a random mutations or you might inherit the gene from one or both biological parents. • There are 19 forms of OI. 1-4 are the most common types. • Complications of OI: ◦ Heart disease and heart failure ◦ Pneumonia ◦ Respiratory issues ◦ Issues with the nervous system (Cleveland Clinic, 2024) (Cleveland Clinic, 2024)
8. IMPACT OF THE DIAGNOSIS/IMPAIRMENT •Anticipated Challenges: Physical mobility & Social Stigma •Recommendations & Pricing: - Enhanced powered wheelchair - Adaptive Crutches & walkers (not applicable to client) - Approximately $1,000-$15,000, dependent on features and customizations (BetterCare, 2025).
9. GROUP PROPOSAL OF 3D PRINTED ASSISTIVE DEVICE • Microphone mount compatible with positioning chair • Public speaking • More accessible, table-free setup • Enhances visibility • Promotes direct audience connection and engagement (Thingiverse, 2018) (mbl.is, 2018)
10. RESOURCE LIST/SUPPORT GROUPS AVAILABLE • OI Community Forum Facebook Group • OI Foundation support networks • Quantum Rehab (wheelchair technologies)
11. FUTURE RESEARCH AND/OR QUESTIONS TO EXPLORE… - Pharmacological treatment - How effective are novel drugs like sclerostin inhibitors (e.g., romosozumab) in improving bone density and reducing fractures in OI patients? - Environmental Modifications - How can home and school environments be best modified to reduce injury risk while supporting engagement in meaningful occupations? - Psychosocial Aspects - How does OI impact self-image, social participation, and occupational identity—especially during adolescence? - What is the long-term impact of early OT intervention on functional independence in adulthood? - Other - Can personalized medicine approaches improve treatment outcomes? - How does OI impact lifespan and aging, particularly in milder forms?
12. REFERENCE LIST • BetterCare. (2025, April 11). How much does a wheelchair cost? https://bettercare.com/costs/wheelchair-cost • Cleveland Clinic. (2024, August 18). Osteogenesis imperfecta (brittle bone disease). Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/osteogenesis-imperfecta-brittle-bone-disease • JA;, A. P. (n.d.). Presentation on assistive technologies for the seating and mobility needs of persons with osteogenesis imperfecta. Connective tissue research. https://pubmed.ncbi.nlm.nih.gov/15612381/#:~:text=Technologies%20such%20as%20contoured%20foam,live%20of%20people%20 with%20OI. • Johns Hopkins Medicine. (n.d.). Osteogenesis imperfecta. https://www.hopkinsmedicine.org/health/conditions-and-diseases/osteogenesis-imperfecta • Oi Support Networks. OI Foundation: Improving the quality of life for people affected by OI through research, education, awareness, and mutual support. (2025, May 15). https://oif.org/support-networks/ • Oskarsson, O. (2018). Freyja haraldsdóttir in parliament, where she was a deputy member of parliament for bright future from 2013-2016. [Online Image]. In mbl.is. https://www.mbl.is/frettir/innlent/2018/06/06/freyja_haraldsdottir_tapadi_malinu/ • Rehab, Q. (n.d.). Osteogenesis imperfecta wheelchair technologies: Quantum rehab®. https://www.quantumrehab.com/osteogenesis-imperfecta/osteogenesis-imperfecta-wheelchair/ • The wheeling of shame and resistance. (2020, December 31). The wheeling of shame and resistance. The Wheeling of Shame and Resistance. https://freyjaharalds.wordpress.com/ • Visir. (2023). Freyja haraldsdóttir, or mom as her foster son steve calls her. [Online Image]. In Visir. https://www.visir.is/g/20232413045d/freyja-ordin-fosturmamma-eg-elska-hann-mjog-mikid- • World Health Organisation. (2001). International classification of functioning, disability and health (ICF). World Health Organisation. https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health