Updated: Oct 13, 2020
When diagnosed with any connective tissue disorder (Ehlers Danlos Syndromes, Hypermobility Spectrum Disorders, Loeys Dietz, or Marfan), you are placed at the starting line of a seemingly confusing medical journey.
Most commonly, you will be diagnosed by a geneticist or rheumatologists after noticing symptoms such as joint laxity, subluxations or dislocations, easy bruising, and chronic body pain. But EDS/Connective tissue disorders are much more complex than that, meaning that there will be other specialists you need to see on a yearly basis for check ups.
Connective tissue disorders are multi systemic. Since your whole body is made up of connective tissue, there is a possibility that comorbidities will arise. For this, your EDS care coordinator will assess your symptoms and provide you with the proper referrals. Here is a list of common referrals that are made for recently diagnosed connective tissue disorder patients:
Physical Therapy: needed to strengthen and stabilize your body. Motion is medicine, and this is hands down the MOST important therapeutic act you can take. Physical therapy is long term treatment, and can help with both physical and emotional aspects of your chronic illness.
Cardiology: Connective tissue disorders and dysautonomia normally go hand in hand. Your cardiologist will be able to order a tilt table test to check for POTS or other kinds of dysautonomia. Your cardiologist will also be able to check for any mitral valve prolapse or aortic dissection (rare).
Neurology: A neurologist is important since some EDS/HSD patients report symptoms including tremors, brain fog, light sensitivity, and migraines. Your neurologist will be able to order the proper testing to rule out specific issues such as Chiari Malformation and cervical instability.
Orthopedic: An orthopedic doctor or orthopedic surgeon will be able to assess any specific needs relating to joint and bone issues that are past the scope of a physical therapist. This can include anything from labral tears, rotator cuff issues, and joint instability.
Gastroenterologist: GI problems are incredibly common in EDS/HSD patients. Seeing a GI specialist to rule out gastroparesis/IBS/Sibo is important to be sure that you are absorbing all of your nutrients correctly.
Psychiatrist: Being diagnosed with a connective tissue disorder is not only a stressor on your body, but also on your mind. Some patients describe it as “having to mourn their old way of life” after being diagnosed, and it is hard. But having the proper team around you, specifically a psychiatrist, can help you in this journey.
Now, this might seem overwhelming -- and it definitely is. But with the right support system and medical team, the treatment and management of connective tissue disorders can be stress free and collaborative. Remember to request copies of all of your records and distribute to your other medical professionals so that they all have a full picture. You got this!
Be sure to consult with your primary care physician or other medical professionals in regards to your medical concerns. This text cannot and should not replace advice from the patient's healthcare professionals. Any person who experiences symptoms or feels that something may be wrong should seek individual professional help for evaluation and/or treatment. This information is for guidance only and is not intended to provide professional medical advice