Mayo Clinic Connect: Ehlers-Danlos Syndrome
The Ehlers-Danlos Syndrome (EDS) Clinic on Mayo Clinic's campus in Jacksonville, Florida, offers comprehensive evaluation by doctors with expertise in caring for people with every form of EDS, including the rare and complex — EDS of known genetic causes, hypermobile EDS and hypermobility spectrum disorders (HSD). They evaluate, diagnose and develop care plans tailored to the needs of each person. It's important to be evaluated by an expert in this disease. EDS is rare and can be hard to diagnose, as its signs and symptoms may overlap with other conditions. Getting an accurate diagnosis as soon as possible will help you avoid further complications.
The EDS team works closely with Clinical Genomics to meet the unique needs of each person. Their multispecialty approach means they might also draw on Mayo Clinic experts in Neurology,
Gastroenterology, Physical Medicine and Rehabilitation, Integrative Medicine and Health, Psychiatry and Psychology, Cardiovascular Medicine, and other areas as needed.
What can you expect?
During your first in-person visit to the EDS Clinic, you'll receive a thorough evaluation that includes screening by a registered nurse to gather personal and family medical history. If you have already undergone genetic testing, a record will be created that shows relationships between family members and their medical conditions, known as a genetic pedigree. During the same initial visit, a doctor will conduct a comprehensive physical examination to include skin, joint (Beighton score) and cardiopulmonary findings.
If you have not completed genetic testing before your first in-person visit, you will be offered an opportunity to undergo this type of test depending on your clinic evaluation. The results would be shared on your second visit. The genetic testing results are used to create an individualized plan for your unique needs.
During a second visit, you'll receive personalized care from a multispecialty team. After a care plan has been developed based on input from the team, you care will be transitioned back to your local health care provider for ongoing care. Some people may need to return to Mayo Clinic if they experience a major life event that requires further evaluation.
As a tertiary facility for hypermobile EDS and HSD, Mayo Clinic works with primary care providers and specialists across the United States and worldwide to ensure seamless continuity of your care.
Opportunities to participate in clinical trials
You might have an opportunity to enroll in a clinical trial when you come to the EDS Clinic. Ask your doctor whether any trials would be appropriate for you. The purpose of this type of research is to:
- Better understand the potential causes of hypermobile EDS and HSD
- Discover the link between hypermobile EDS, HSD and other chronic medical conditions
- Develop better models of care and novel therapies that improve the quality of life for people with these conditions
For appointments or more information, call 904-953-0869 or the Ehlers-Danlos Syndrome Clinic in Florida appointment office at 904-944-3149 8 a.m. to 5 p.m. Eastern time, Monday through Friday or complete an online appointment request form.