Ehlers-Danlos Syndrome (EDS)

The MUSC Ehlers-Danlos Syndrome Center is focused on caring for people with EDS and EDS-related disorders. The Center is designed to make care easier to navigate, more personalized, and based on the latest medical knowledge while supporting research and education, helping to improve treatments and outcomes. At the center, you will find a specialized team that understands the complexities of EDS. Each team member works closely together to provide care that is tailored to the patient’s individualized needs.

The center has two clinical pathways:

• Consultation: Following a comprehensive evaluation (2 visits), personalized treatment recommendations are provided to the patient to outline suggested guidance for ongoing care.
• Subscription Membership: A subscription-based model that includes an annual fee, not billable to insurance, and provides patients with access to ongoing personalized and comprehensive care focused on preventive medical care and wellness plans customized to their unique needs. Subscription memberships are limited to allow the care team the time needed to focus on your health care needs and coordination of care.

Depending on the chosen pathway, most patients can pay for their care through a combination of health insurance and/or an annual Subscription Fee.

Insurance – All visits in the Center will be billed to insurance, if applicable. The Center accepts most forms of insurance; please see MUSC’s Insurance Plans Accepted at MUSC Health Website. Please Note: At this time, we are unable to accept patients insured by Medicaid who reside outside of South Carolina.

In addition to all visits being billed to insurance (info above), patients accepted to the Subscription Program will pay an annual fee.

Annual Subscription Fee – Patients sign a Subscription Agreement and pay an annual Subscription Fee of $2,000.00; the Fee covers services deemed medically appropriate by the care team, but which may not be covered by your health insurance plan. The annual fee will be due once you are accepted and before being seen for your first membership, then it will be due on an annual basis. The annual fee will not be billed to insurance; it is an out-of-pocket charge and must be paid in full. No payment plans are available for the annual fee.

MUSC Ehlers-Danlos Syndrome Center provides services covered by insurance. It is advisable to check with your HSA, FSA, MSA, or HRA administrator to determine whether the types of services described in your Subscription Agreement fall within the scope of reimbursable medical expenses under the rules established by the HSA, FSA, MSA, or HRA.

Patients will be seen at the MUSC Ehlers-Danlos Syndrome Center office. Your care team will develop an evidence-based plan to provide you with all appropriate recommended screenings, which could occur in the office or at another MUSC- affiliated office.

Members of the Subscription Program will also receive the following as part of their membership:

• Sleep Disorder Screening
• Fall Risk Assessments
• Other Lifestyle Assessments
• Mental Health Screening
• Other Health Screenings as may be deemed appropriate by the care team, including immune disorders, neuropsychiatric disorders, including mental health evaluation and treatment services, and other specialized medical services

After completing the comprehensive consultation, if you aren’t a candidate or choose not to become a patient of the Subscription Program, you will be provided with a recommended treatment plan that you can share with your treating provider for ongoing coordination of care.

If you choose to become a member of the Subscription Program and are living in the Charleston, SC area, to streamline your care, we recommend that you transition your Primary Care needs to our team. They will serve as your primary care provider and manage all your healthcare needs. However, if you prefer to maintain your current primary care provider, the team will work with that provider to coordinate your care to best fit your needs as a patient.

Patients reserve the right to seek care from outside specialists and hospitals.

MUSC Ehlers-Danlos Syndrome Center Subscription Agreements extend only to the individual patient; there is currently no family discount. Additionally, MUSC Ehlers- Danlos Syndrome Center physicians do not provide care to pediatric patients.Patients are required to be 16 years of age or older to apply.

Patients will be able to terminate their Subscription Agreement at any time. However, a patient shall only be entitled to a refund in the following circumstances:

• You terminate the Agreement because of the inability of MUSC Ehlers-Danlos Syndrome Center to continue to make its services available to you;
• Either you or MUSC Health chooses to terminate the Subscription Agreement by notifying the other party at least 6 months in advance.
• In any such event, you will be entitled to a refund of the Subscription Fee, prorated to the date of termination. Refunds are not available for newly hospitalized patients or acutely ill patients, regardless of the duration of their treatment or whether a wellness exam has been performed.

All services provided within the Center will be billed to your insurance and/or covered by the Subscription Fee. You will be responsible for any services rendered outside of the Center, such as labs, specialty referrals, medications, testing, etc. We encourage you to check with your insurance provider before receiving additional services.

Yes. A referral from your healthcare provider is required to be seen at the MUSC EDS Center.

This helps ensure we receive the necessary clinical information to coordinate your consultation effectively. Your referring provider can fax the referral and supporting documentation to our office at 843-985-9295.