Jennifer Hegelein
industrial designer
What is FOP?
Fibrodysplasia Ossificans Progressiva
Extremely rare
genetic disease
Muscles, tendons, and ligaments turn to bone
Process of progressive, uncontrolled bone growth​ brought on by "flare-ups"
Cycle of flare-ups lead to permanent fixation of most major joints in the body
Daily Activities with FOP
Individuals with FOP become fused and locked in positions, limiting independence, and making daily activities difficult to execute.
Limited Mobility Impacts:
Reaching
Toileting
Oral Hygiene
Eating
Dressing
Grooming
The progression and pattern of FOP is highly variable for each person. Current assistive devices do a poor job meeting their continual adaptations.
Self-Grooming Market
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Current assistive hairbrushes replicate an extension of the forearm
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Elongated handles and a slight curve to help reach the back of the head
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Do not bend, turn, or adjust
Early in FOP disease progression, the neck fuses (fixed looking straight) and the shoulders fuse (arms fixed to sides)
Current devices lack the necessary range of movement to brush your hair with FOP
Typical movement has wrist & elbow in opposition: as wrist brushes down, elbow raises up
Brushing Different Lengths of Hair
Top of Hair
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Forearm pivots at elbow
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Shoulder in; elbow in
Midsection of Hair
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Forearm pivots at elbow
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Shoulder extended; elbow out
Ends of Long Hair
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Shoulder & elbow move down with the brush
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Elbow & wrist pivot as user brushes down
How might we design a hairbrush that...
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Effectively brushes long and short hair
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Can be used with shoulders fused at sides
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Doesn't put stain on the wrist
Exploring Lengths & Angles
Different ways to brush long hair with FOP constraints, focusing on reaching the back of the head (most difficult spot)
Exploring Grips
Discovered that a "steering wheel" approach offered the greatest number of possible grip positions
This design gives patients more options to test, providing more valuable feedback
Sending Prototypes for User Testing
Features
Prototype #1
Prototype #2
3D printed cuff reinforced with rubber
Hose clamp with thumb screw clamps hairbrush to prototype
Proof of concept functional prototype
Exploration of heights & angles that accommodates the variable range of angles that the elbows can be fused at
3D printed hinge knuckles for adjustable angles
Adapts to PVC and is secured with cam clamp
Prototype #1
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"T" shaped handle design to test vertical grip options
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Shaft height adjusts telescopically
Locks & unlocks with a twist, infinitely adjustable
3D printed clamp sandwiching shaft and handlebars
Occupational Therapist Testing Prototype
Prototype #2
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Testing open handle grip design
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Handle moves relative to the shaft height
Feedback From Testing
After 1- on-1 feedback and a discussion with a panel of OTs, FOP experts, and the IFOPA, we found these conclusions:
This FOP expert has her left arm fused by her side, and is able to bend her right forearm up as shown.
The overall height is too large, but she was able to make adjustments to my prototype that worked for her
Next Iteration
Moving Forward
At the end of the year, Jefferson ID faculty selects devices from The WILL Project to continue developing by assigning them to students in the next cohort. This strategy allows the department to work as a team; building upon prior students' work allows the designs to develop much more detail, so they can ultimately be in the hands of the FOP users!
The Assistive Hairbrush is currently in development by the next student, taking my next steps and beyond as they continue testing, iterating, and progressing the device.
WILL Project
"We Improve Life & Living with FOP"
Rendering of my last iteration before passing the project on
About The WILL Project
2019: WILL Project is a collaboration between Occupational Therapists & Industrial Designers.
2021: IRB Approved data collection during design process & partnership with Shenkar University, Israel
Jefferson is a worldwide center for FOP treatment, making this connection possible
Importance of Industrial Design (ID)
& Occupational Therapy (OT) Collaboration
ID Impact:
OT Impact:
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Presence of end-user opinions & usability testing procedures
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Knows how to create beyond single user populations
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Understand medical & cognitive fundamentals
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Effective solutions for end-users
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(clients & therapists)
OT Process
ID Process