New York Institute of Technology Ehlers-Danlos Syndrome/Joint Hypermobility Center hosted a patient and practitioner EDS symposium yesterday. It was a jam-packed day of learning and networking! This wonderful day was hosted by Dr. Bernadette Riley, Director of the NYIT EDS Center. I was super-psyched to learn from all these great physicians. Unfortunately, nutrition was not one of the topics of discussion, but if you would like to know more, read my blog about my favorite EDS supplements HERE.
First to speak was the truly amazing Dr. Anne Maitland, who reminded us that EDS is not just a musculoskeletal condition; mast cells are influenced by connective tissue, and vice versa! Mast Cell Activation Disorder (MCAD) is often co-morbid with EDS. Mast cells act as the body’s border patrol just under the skin. They approach any invaders shooting mediators like histamine, prostoglandins, cytokines, etc at them. They are our first line of defense. Dr. Maitland cautioned practitioners not to dismiss smaller symptoms when evaluating for MCAD. If two organs are involved symptom-wise, MCAD should be worked up. Once you diagnose MCAD, it is important to figure out what exactly is causing the mast cells to fire off their mediators and eliminate the triggers, which can be food, environment, stress, or illness. The most exciting part of her talk, was the announcement of the release of her book, “In Sickness & In Health” being released next week!
Next up was Dr. Guy Mintz, Cardiologist. He enlightened us about the importance of EDS patients getting cardiac workups to look for heart abnormalities. Chest pain can occur due to mitral valve prolapse (MVP), costochondritis, sternum subluxations, and aortic abnormalities. Palpitations can occur from MVP, orthostasis, and volume depletion. Orthostatic intolerance results from autonomic dysfunction and postural orthostatic tachycardia syndrome (POTS). Dyspnea can occur from valve disease and spontaneous pneumothorax. The recommendation is for a baseline echocardiogram. If baseline is normal, follow-up should be every 2-5 years. If baseline has findings, follow-ups should be closer together.
We then heard from Dr. Derek Brinster, Cardiothoracic Surgeon. He showed us a video of a valve repair on a patient with a connective tissue disease. Not for the squeamish, but fascinating. He discussed the complications of aortic issues, specifically aneurisms and dissections. His hospital has a truly amazing setup with regards to dealing with emergency aneurisms.
Dr. George Cheriyan was up next, discussing Osteopathic Manipulation and skeletal issues with EDS. Often times headaches and other pains can be the cause of somatic dysfunction. He stressed the importance of looking at the body as a whole, not individual parts. Osteopathic manipulation can help with back pain, migraines, and even lessen hospital stays for pneumonia. Finding a practitioner skilled in neuromuscular manipulation is key.
Dr. Adam Bitterman, Orthopedic Surgeon, enlightened us on a different connective tissue disorder, Marfans. He discussed various orthopedic considerations for connective tissue diseases, such as dural ectasia, which is when the sac surrounding the spinal chord widens, and scoliosis. Interestingly, Dr. Bitterman noted that scoliosis from a connective tissue disorder does not respond well to bracing. Surgeries requiring soft tissue repair have better outcomes when using cadaver tendons rather than trying to repair tendons with the patient’s own tissue. He also stressed the importance of not doing any “grunt” work, meaning, lifting heavy objects that cause you to grunt as you lift.