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About Marfan Syndrome
Marfan syndrome is a genetic disorder of the connective tissue that can affect the skeleton, lungs, eyes, heart, and blood vessels. The condition affects both men and women of any race or ethnic group. It is estimated that at least 200,000 people in the United States have Marfan syndrome or a related connective tissue disorder.
Characteristics of the disorder vary greatly, but the most common problems associated with Marfan syndrome include heart problems, scoliosis, and near-sightedness. There is no cure for the disorder yet, but careful medical management can greatly improve the prognosis and lengthen the life span.
Marfan Syndrome and the Americans with Disabilities Act
The ADA does not contain a definitive list of medical conditions that constitute disabilities. Instead, the ADA defines a person with a disability as someone who (1) has a physical or mental impairment that substantially limits one or more "major life activities," (2) has a record of such an impairment, or (3) is regarded as having such an impairment. For more information about how to determine whether a person has a disability under the ADA, see How to Determine Whether a Person Has a Disability under the Americans with Disabilities Act Amendments Act (ADAAA).
Accommodating Employees with Marfan Syndrome
People with Marfan syndrome may develop some of the limitations discussed below, but seldom develop all of them. Also, the degree of limitation will vary among individuals. Be aware that not all people with Marfan syndrome will need accommodations to perform their jobs and many others may only need a few accommodations. The following is only a sample of the possibilities available. Numerous other accommodation solutions may exist.
Questions to Consider:
- What limitations is the employee experiencing?
- How do these limitations affect the employee and the employee’s job performance?
- What specific job tasks are problematic as a result of these limitations?
- What accommodations are available to reduce or eliminate these problems? Are all possible resources being used to determine possible accommodations?
- Once accommodations are in place, would it be useful to meet with the employee to evaluate the effectiveness of the accommodations and to determine whether additional accommodations are needed?
- Do supervisory personnel and employees need training?
Accommodation Ideas:
By Limitation
Decreased Stamina/Fatigue
- Accessories for Scooters
- Aide/Assistant/Attendant
- All-Terrain Scooters
- Anti-fatigue Matting
- Elevating Wheelchairs
- Ergonomic and Pneumatic Tools
- Ergonomic Assessments
- Ergonomic Equipment
- Examination and Procedures Chair
- Flexible Schedule
- Head Support for Wheelchairs
- Job Restructuring
- Low Task Chair
- Mechanic's Seats and Creepers
- Multi-Purpose Carts
- Periodic Rest Breaks
- Scooters
- Stand-lean Stools
- Stools for Cutting Hair
- Telework, Work from Home, Working Remotely
- Walkers
- Wearable Anti-fatigue Matting
- Wheelchair Accessible Scales
- Wheelchair Mounts
- Wheelchairs
- Worksite Redesign / Modified Workspace
Lifting
- Accessible Baby Changing Stations
- Adjustable Exam Tables
- Adjustable Massage Tables
- Adult Changing Tables
- Aerial Lifts
- Animal Lift Tables
- Automated Filing Systems
- Ball Transfer Tables
- Bath Chairs
- Battery Powered Lift Tables
- Cake Decorating and Baking Equipment
- Carts
- Compact Material Handling
- Compact Mobile Cranes
- Drum Handling
- Drywall and Wallboard Lifts
- Electronic Organizers
- Engine Lifts and Lift Plates
- Ergonomic Assessments
- Ergonomic Equipment
- Evacuation Devices
- Folding Steps
- Hair Scissors
- Hands Free Resuscitation Devices
- Height Adjustable Table Legs
- Independent Living Aids
- Job Restructuring
- Large-Rated Small Step Ladders
- Large-Rated Wheelchair Lifts
- Lift Gates
- Lift Tables
- Lifters and Carriers for Mobility Aids
- Lifting Aids
- Light Switch Extension Handles
- Lightweight Lead Aprons
- Low Task Chair
- Manhole Cover Lifts
- Multi-Purpose Carts
- Patient Lifts (General)
- Periodic Rest Breaks
- Pickups, Semis, and Heavy Equipment
- Pipettes
- Pool Lifts
- Power Lift IV Stands
- Powered Bath Lifts
- Professional Organizers
- Proper Lifting Techniques
- Rolling Safety Ladders
- Spring-Loaded Carts
- Stainless Steel Carts and Worktables
- Stair Assists
- Stairclimbing Handtrucks
- Talking Bar Code Scanner/Reader
- Test Tube Holders
- Tire Handling
- Toileting Aids
- Tool Balancers
- Transfer Aids
- Transfer Sheets
- Truck Mounted Cranes
- Vacuum Lifts
- Vacuum Pickup Tools
- Vehicle Lifts and Manipulators
- Walk-up Changing Tables
- Wheelchair Lifts
- Winches and Chain Hoists
- Work Platforms
Stress Intolerance
- Apps for Anxiety and Stress
- Behavior Modification Techniques
- Counseling/Therapy
- Environmental Sound Machines / Tinnitus Maskers / White Noise Machines
- Flexible Schedule
- Job Restructuring
- Marginal Functions
- Modified Break Schedule
- Supervisory Methods
- Support Animal
- Support Person
Situations and Solutions:
The following situations and solutions are real-life examples of accommodations that were made by JAN customers. Because accommodations are made on a case-by-case basis, these examples may not be effective for every workplace but give you an idea about the types of accommodations that are possible.
![A customer service rep with Marfan syndrome which resulted in heart issues.](/images/schedule-sheet_5257_259x194.jpg)
A customer service rep with Marfan syndrome which resulted in heart issues.
The employee needed to attend periodic medical appointments, but the appointments were scheduled during their shift at work. The employee requested leave and a flexible schedule as reasonable accommodations, which the employer approved on a temporary basis.
![A paralegal with Marfan syndrome was experiencing fluctuating vision, therefore she was having trouble viewing her computer screen.](/images/gavel_5257_259x194.jpg)
A paralegal with Marfan syndrome was experiencing fluctuating vision, therefore she was having trouble viewing her computer screen.
The employer noticed her having a hard time and purchased screen reading software which allowed her to continue performing her computer tasks.
![A production worker in a manufacturing plant experienced fatigue which stemmed from Marfan syndrome.](/images/warehouse_2_5257_259x194.jpg)
A production worker in a manufacturing plant experienced fatigue which stemmed from Marfan syndrome.
The employer noticed her having a hard time and purchased screen reading software which allowed her to continue performing her computer tasks.
![An human resources specialist for a department store was recently required to add a weekend shift to her work schedule once a month.](/images/schedule_5257_259x194.jpg)
An human resources specialist for a department store was recently required to add a weekend shift to her work schedule once a month.
This caused significant stress which caused an exacerbation to her Marfan syndrome. After making a request for a flexible schedule along with medical documentation, the employer approved removing the weekend shift as an accommodation. This enabled the employee to work her regular schedule without worsening her symptoms.
![A warehouse stock clerk with Marfan syndrome had lifting restrictions.](/images/warehouse-worker-delivering-supplies_5257_259x194.jpg)
A warehouse stock clerk with Marfan syndrome had lifting restrictions.
After realizing he was having a hard time performing his job tasks, he told his employer his concerns. The employer purchased a compact lifting device to enable the employee to continue lifting boxes and work within his medical restrictions.
JAN Publications & Articles Regarding Marfan Syndrome
Publications
Consultants' Corner Articles
Articles
- No Articles available for Marfan Syndrome
Blog Posts
- No Blog Posts available for Marfan Syndrome
Events Regarding Marfan Syndrome
- Upcoming Events
- Past Recorded Module
- Past In-person Training
- Past Exhibit Booths
- Past Webcast Series Training
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Just-in-Time Training Module: Disclosing a Disability in the WorkplaceJanuary 28, 2022
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ADA & Workplace Accommodations - Episode #44May 5, 2022
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The ADA and Workplace Accommodation for Employees with Voice DisordersJanuary 31, 2024
Transcripts
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Low-Key AT: Less-Obvious Options for Entry-Level WorkersMarch 16, 2022
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Accessibility as a Key to InclusionJuly 25, 2022
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Transition and Workplace Accessibility: What’s New in 2023?February 2, 2023
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Together Again: AT for Travel and Inclusive EventsFebruary 3, 2023
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2023 CSUNMarch 17, 2023
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ATIA 2024 ConferenceJanuary 25, 2024
Presenters:
- Teresa Goddard , Lead Consultant – Assistive Technology Services
Presentations
Presenters:
- Teresa Goddard , Lead Consultant – Assistive Technology Services
Presentations
Presenters:
- Teresa Goddard , Lead Consultant – Assistive Technology Services
Presenters:
- Teresa Goddard , Lead Consultant – Assistive Technology Services
- Lisa Mathess , Principal Consultant, ADA Specialist
Presenters:
- Teresa Goddard , Lead Consultant – Assistive Technology Services
- Lisa Mathess , Principal Consultant, ADA Specialist
Presentations
Presenters:
- Teresa Goddard, Lead Consultant, Assistive Technology Services
- Lisa Mathess, Principal Consultant, ADA Specialist
Presentations
Accommodating Educational Professionals: Meeting Workplace Needs with AT
Friday 1-2pm
Grand Ballroom 7B
Session Code: TWA-05
Back on Track with the Interactive Process: When Accommodations Go Off the Rails
Friday 4:30-5:30
Magnolia 2
Session Code: TWA-02
Transition and Workplace Accessibility: What’s New in 2024?
Thursday 4:30-5:30
Magnolia 2
Session Code: TWA-08
Presenters:
- Teresa Goddard, Lead Consultant, Assistive Technology Services
- Lisa Mathess, Principal Consultant, ADA Specialist
Presentations
Accommodating Educational Professionals: Meeting Workplace Needs with AT
Friday 1-2pm
Grand Ballroom 7B
Session Code: TWA-05
Back on Track with the Interactive Process: When Accommodations Go Off the Rails
Friday 4:30-5:30
Magnolia 2
Session Code: TWA-02
Transition and Workplace Accessibility: What’s New in 2024?
Thursday 4:30-5:30
Magnolia 2
Session Code: TWA-08
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ADA UpdateJuly 13, 2021
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AT Update: What’s new in 2021August 10, 2021
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Ask JAN! Expert Q&AOctober 14, 2021
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Return to Work After COVID-19 – Focus on Mental Health and Cognitive LimitationsNovember 18, 2021
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Accommodation Solutions for Autoimmune DisordersDecember 9, 2021
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Next-Level Accommodation and ADA ChallengesJanuary 13, 2022
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ADA and Accommodation Lessons Learned: Stay at Work/Return to Work EditionFebruary 10, 2022
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Ergonomics for TeleworkersMarch 1, 2022
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Accommodation Solutions for Executive Functioning DeficitsMarch 17, 2022
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Accommodation Solutions for Gastrointestinal DisordersApril 14, 2022
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Accommodation and ADA Considerations: Reproductive Disorders and PregnancyMay 12, 2022
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Personal Use or Reasonable Accommodation: What’s What?June 9, 2022
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ADA UpdateJuly 14, 2022
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AT Update 2022August 11, 2022
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Accommodation Solutions for Sleep DisordersSeptember 22, 2022
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Building a Disability-Inclusive OrganizationOctober 13, 2022
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Providing Reasonable Accommodations to Veterans with DisabilitiesNovember 10, 2022
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Ask JAN! Q&AJanuary 12, 2023
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Supports and Services: Accommodations with a HeartbeatFebruary 9, 2023
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What You Should Know About the Impact of Long COVID in the WorkplaceMarch 9, 2023
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Accommodation Solutions for Neurodivergent WorkersApril 13, 2023
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Accommodation Solutions for Fine Motor LimitationsMay 11, 2023
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What to Do When Performance and Conduct Factor Into the Accommodation EquationJune 8, 2023
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ADA Update 2023July 13, 2023
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Assistive Technology (AT) Update: What’s New in 2023August 10, 2023
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Accommodation Solutions: Substance Use DisorderSeptember 14, 2023
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The Way I See It: Accommodation Process Perspectives from Different Points of ViewOctober 12, 2023
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Accommodation Solutions: Respiratory Conditions, Allergies, & Fragrance SensitivityNovember 9, 2023
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Accommodation Solutions for Employees with Intellectual DisabilitiesDecember 12, 2023
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ADA and Beyond Compliance Considerations: Medical DocumentationJanuary 11, 2024
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Ask JAN! Q&A: Sensory Team EditionMarch 14, 2024
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Accommodating Employees with Diverse Cognitive and Neurological NeedsApril 11, 2024
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Ask JAN! Q&A: Cognitive / Neurological Team EditionMay 9, 2024
Presenters:
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
- Jeanne Goldberg is a Senior Attorney Advisor in the Office of Legal Counsel at the U.S. Equal Employment Opportunity Commission.
Handouts
Presentations
Transcripts
Presenters:
- Teresa Goddard , Lead Consultant – Assistive Technology Services
- Matthew McCord , Senior Consultant – Motor Team
Presentations
Transcripts
Presenters:
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
- Melanie Whetzel , Principal Consultant, Team Lead
- Teresa Goddard , Lead Consultant – Assistive Technology Services
- Lisa Mathess , Principal Consultant, ADA Specialist
Presentations
Transcripts
Presenters:
- James Potts , Senior Consultant - Cognitive/Neurological Team
- Melanie Whetzel , Principal Consultant, Team Lead
- Linda Carter Batiste , Director of Services and Publications
Presentations
Transcripts
Presenters:
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
- Teresa Goddard , Lead Consultant – Assistive Technology Services
- Lisa Mathess , Principal Consultant, ADA Specialist
Presentations
Transcripts
Presenters:
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
Presentations
Transcripts
Presenters:
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
- Lisa Mathess , Principal Consultant, ADA Specialist
Presentations
Transcripts
Handouts
Presenters:
- Lisa Mathess , Principal Consultant, ADA Specialist
- Matthew McCord , Senior Consultant – Motor Team
Presentations
Transcripts
Presenters:
- Alexis Popa , Consultant - Cognitive/Neurological Team
- Melanie Whetzel , Principal Consultant, Team Lead
Presentations
Transcripts
Presenters:
- Matthew McCord , Senior Consultant – Motor Team
- Julie Davis , Consultant - Motor Team
Presentations
Transcripts
Presenters:
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
Presentations
Transcripts
Presenters:
- Lisa Mathess , Principal Consultant, ADA Specialist
- Matthew McCord , Senior Consultant – Motor Team
Presentations
Transcripts
Handouts
Presenters:
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
- Jeanne Goldberg - Senior Attorney Advisor, Office of Legal Counsel, Equal Employment Opportunity Commission (EEOC)
Handouts
Presentations
Transcripts
Presenters:
- Teresa Goddard , Lead Consultant – Assistive Technology Services
- Matthew McCord , Senior Consultant – Motor Team
- Christy McCune , Consultant - Sensory Team
Presentations
Handouts
Transcripts
Presenters:
- Alexis Popa , Consultant - Cognitive/Neurological Team
- Melanie Whetzel , Principal Consultant, Team Lead
Presentations
Transcripts
Presenters:
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
- Ellice Switzer, EARN Workplace Disability Inclusion Associate
Presentations
Transcripts
Ellice Switzer, EARN Workplace Disability Inclusion Associate
Ellice is an Extension Associate with the K. Lisa Yang and Hock E. Tan Institute on Employment and Disability. She provides content development, training and technical assistance for EARN. As an Extension Associate, she provides national technical assistance and training on topics related to disability and employment, and U.S. disability policy. Her areas of focus include employer practices to support workforce disability inclusion, demand-side strategies to improve employer engagement among disability service providers and evidence-based practices to support post-school success for youth with disabilities.
Presenters:
- James Potts , Senior Consultant - Cognitive/Neurological Team
- Melanie Whetzel , Principal Consultant, Team Lead
Presentations
Transcripts
Presenters:
- Lisa Mathess , Principal Consultant, ADA Specialist
- Melanie Whetzel , Principal Consultant, Team Lead
- Teresa Goddard , Lead Consultant – Assistive Technology Services
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
Presentations
Transcripts
Presenters:
- James Potts , Senior Consultant - Cognitive/Neurological Team
- Lisa Mathess , Principal Consultant, ADA Specialist
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
Presentations
Transcripts
Presenters:
- Tracie DeFreitas , Program Leader, Director of Training and Outreach
- Terri Rhodes, Chief Executive Officer, Disability Management Employer Coalition (DMEC)
- Bryon Bass, Senior Vice President Workforce Absence and Disability Practice Leader, Sedgwick
- Susanne Bruyere, Co-Director and Co-Principal Director, Employer Assistance and Resource Network on Disability Inclusion (EARN)
Handouts
Presentations
Transcripts
Presenters:
- Melanie Whetzel , Principal Consultant, Team Lead
Presentations
Transcripts
Presenters:
- Julie Davis, Consultant - Motor Team
- Matthew McCord, Senior Consultant - Motor Team
Presentations
Transcripts
Presenters:
- Lisa Mathess, Principal Consultant, ADA Specialist
- Melanie Whetzel, Principal Consultant, Team Lead
- Tracie DeFreitas, Program Leader, Director of Training, Services, and Outreach
Presentations
Transcripts
Presenters:
- Tracie DeFreitas, Program Leader, Director of Training, Services, and Outreach
- Jeanne Goldberg, Equal Employment Opportunity Commission (EEOC)
Presentations
Transcripts
Presenters:
- Matthew McCord, Senior Consultant – Motor Team
- Teresa Goddard, Lead Consultant – Assistive Technology Services
- Jose Gonzalez Lopez, Consultant — Sensory/Motor Teams
Presentations
Transcripts
Presenters:
- James Potts, Senior Consultant - Cognitive/Neurological Team
- Melanie Whetzel, Principal Consultant, Team Lead
- Linda Batiste, Director of Publications and Services
Presentations
Transcripts
Presenters:
- Lisa Mathess, Principal Consultant, ADA Specialist
- Lore Lee, Consultant
- Matthew McCord, Senior Consultant – Motor Team
- Tracie DeFreitas, Program Leader, Director of Training, Services, and Outreach
Presentations
Transcripts
Handouts
Presenters:
- Teresa Goddard, Lead Consultant – Assistive Technology Services
- Jose Gonzalez Lopez, Consultant - Sensory/Motor Teams
Presentations
Transcripts
Presenters:
- Melanie Whetzel, Principal Consultant, Team Lead Cognitive/Neurological Team
Presentations
Transcripts
Presenters:
- Lisa Mathess, Principal Consultant, ADA Specialist
- Tracie DeFreitas, Program Leader, Director of Training and Outreach
Presentations
Transcripts
Handouts
Presenters:
- Jose Gonzalez Lopez, Consultant – Sensory/Motor Teams
- Teresa Goddard, Lead Consultant – Assistive Technology Services
Presentations
Transcripts
Presenters:
- Melanie Whetzel, Principal Consultant, Team Lead
Presentations
Transcripts
Presenters:
- Melanie Whetzel, Principal Consultant, Team Lead
- Bill McCollam, Consultant – Cognitive/Neurological Team
Presentations
Transcripts
Other Information Regarding Marfan Syndrome
External Links
- Diseased & Conditions: Marfan Syndrome
- EEOC's Reasonable Accommodation and Undue Hardship Guidance Under the ADA
- Marfan Syndrome
- Marfan Syndrome Overview
- Marfan Syndrome: How is the Body Affected?
- PART 1630—Regulations to Implement the Equal Employment Provisions of the Americans with Disabilities Act
Organizations
- Job Accommodation Network
- Office of Disability Employment Policy
- DNA Learning Center: Cold Spring Harbor Laboratory
- Genetic and Rare Diseases Information Center (GARD)
- Heart and Stroke Foundation of Canada
- March of Dimes Foundation
- Mayo Clinic
- MedlinePlus
- National Center for Biotechnology Information
- National Heart, Lung, and Blood Institute
- National Human Genome Research Institute
- National Organization for Rare Disorders
- The Marfan Foundation