Overview of the doctoral capstone experience:

• The doctoral capstone is a 14-week experience that provides in-depth exposure to one or more of the following areas:
  • Clinical practice skills
  • Research skills
  • Administration
  • Leadership
  • Program and policy development
  • Advocacy
  • Education
  • Theory development
• This experience is completed during the third and final year of Drake’s doctoral occupational therapy program.

The overarching goal of Ashley’s capstone: increase awareness and access to information and resources for individuals with a diagnosis of Ehlers-Danlos syndrome (EDS) and healthcare providers.

The Ehlers-Danlos syndromes are a group of 13 heritable connective tissue disorders. Connective tissue is found throughout the body to provide support, protection, and structure. Each type of EDS has its own set of features; some features that are seen across all types of EDS include joint hypermobility, skin hyperextensibility, and tissue fragility.  Of the 13 types, hypermobile EDS (hEDS) is the most commonly seen as it accounts for about 90% of EDS cases.

Approximately 1 in 3,100 – 5,000 people are diagnosed with hEDS and is currently classified as a rare disorder. It wasn’t until 2023 when Ashley received her diagnosis of hypermobile EDS, almost 12 years after she began experiencing various health issues that were seemingly unrelated at the time. Throughout her diagnosis experience, she has had to advocate for herself on numerous occasions to receive the appropriate care. Ashley wanted to address this barrier and gap in the knowledge surrounding EDS as her doctoral capstone.

As part of Ashley’s capstone experience, she created resources for individuals diagnosed with EDS or seeking more information for either themselves or family members. These materials provide insight into techniques such as joint protection and energy conservation and provide a basic overview of the diagnosis and steps to consider once someone is diagnosed. Ashely also created resources for healthcare professionals who are providing care to individuals with EDS or who are seeking more information on the diagnosis. Occupational therapists play a vital role in the treatment of connective tissue disorders as they can use their expertise in task analysis and adaptive equipment to return someone to the meaningful tasks of their daily lives through adaptations and accommodations.

Resource Guides:

*Disclaimer: These resources are offered free of charge for public use and are intended to support educational and informational purposes only. While every effort has been made to ensure accuracy and relevance, I cannot guarantee the completeness or suitability of the information provided.

What Ashley said about her capstone experience:

“Over the past 14 weeks, I have worked under the guidance of Daniel Van Sant, the Director of Disability Policy at The Harkin Institute of Public Policy & Citizen Engagement. During this time, I have been involved in many diverse advocacy initiatives and meetings that have had a significant impact on developing my professional and advocacy skills. One of my favorite events I assisted with was the Drake University Accessibility Resource Fair which was held during National DEI Week for students, faculty, and staff to learn about resources that are available for the disability community on Drake’s campus. The Harkin Institute influences every individual, group, and community by creating a truly inclusive space where these connections can thrive.

My capstone placement with The Harkin Institute granted me the opportunity to work in the Tom and Ruth Harkin Center. The center is an embodiment of universal design, a concept of thinking beyond the basic compliance to the Americans with Disabilities Act (ADA) accessibility requirements. It considers the qualities of space and concepts of the environment to create a truly inclusive setting that is accessible by all people, serving as a guide throughout my experience. I would like to acknowledge and thank Daniel Van Sant and the staff at The Harkin Institute for creating an environment that empowered me to advocate for myself and others living with a non-visible disability. The Harkin Institute serves as proof that it’s not someone’s disability holding them back from achieving greater things; it’s the surrounding environment’s inability to support someone at their best, regardless of what that looks like from day to day.”