The Seed Has Been Planted

Similar to planting a new plant, you have just planted a seed towards a new life. For you to blossom, it will take nurturing, some pruning, patience and maintenance.

Next Steps

You finally made it through your appointment and a lot was probably thrown at you! We know it’s a lot, and this is why we developed this clinic to both take care of you, but to also educate you about hypermobility and Ehlers-Danlos syndromes. Each patient has a different course; therefore, there is no general checklist that applies to every patient. Here are the major checkpoints of the program:

  • Complete your lab work if you have not already done so. YOU MUST BE OFF OF ANTIHISTAMINES OR STEROIDS FOR A WEEK.

  • Complete any imaging (x-rays, MRIs) that may have been ordered.

  • Keep an eye out for phone calls related to scheduling your referrals. If you don’t have an appointment scheduled in two weeks, please email us.

  • Begin physical therapy if directed. You must call the physical therapist to schedule.

  • Prepare for a call with our Nurse Practitioner at 4-6 weeks to make sure your treatment is moving in the right direction.

  • After the televisit, follow the next steps in recommendations

  • Refer to the information provided to you at your appointment.

Please be patient with the process. The most successful cases improve slowly over time. We will do our best to help you get there.

Lab Work/Imaging Tips

Lab orders given to patient can be brought to Tulane lab or Quest Diagnostic. If you have Blue Cross Blue Shield, please use Quest Labs to ensure proper coverage.

You must be off antihistamines for 7 days before having labs drawn.

Labs are non-fasting unless instructed otherwise by medical team.

You may begin antihistamine regimen ( if ordered ) after labs are drawn.

The second serum tryptase level is given to patient on a separate order form. This lab is to be drawn on a patient “flare up” day.  This again is a non-fasting test.

We will possibly order diagnostic images. This can be xrays, MRI’s and other scans.

Please bring any images on disc with report done at an outside facility with you.

X-rays can be performed at our clinic during your evaluation visit if necessary.

MRI tests may be ordered and sent to our pre-authorization department to obtain insurance approval. After pre-authorization is obtained, we will call you to schedule you at your choice facility.

Please email us at TUHC_EDSClinic@hcahealthcare.com. We will respond as quickly as we can.

If you have an emergency, please go to the emergency room. Please do not assume that any serious injury is “just EDS.”

SUPPORT THE TULANE EDS RESEARCH FUND

Research on hypermobility and Ehlers-Danlos Syndromes is far behind other medical diagnoses. It takes the voice of the patient and the support of the community to fund research projects that will allow increased awareness, development of diagnostic criteria and evidence-based treatment protocols.

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