What is the Ehlers-Danlos syndrome (SED) ?
Meet Dr Maya Marza, General Practitioner and integrative care advocate. Maya shares with us her expertise on Elhers-Danlos. She answers all the question you might have on what it is, how to assess it and deal with its symptoms.
Dr Marza, can you tell us what Ehlers-Danlos is?
I have recently become aware of a relatively new medical condition called the Ehlers-Danlos Syndrome (EDS). It was first described about a century ago, and there are currently about ten different profiles associated with it. A shared characteristic of EDS is hypermobility or hyper flexibility of the joints. Additionally, my observation from an Ayurvedic perspective is that this condition is associated with an excess of Vata energy, which manifests in the form of high emotional lability. For example, some EDS sufferers might experience intense pain during episodes of constipation, pain that vanishes quickly when the constipation subsides. They are like a sponge that would fast absorb an excessive amount of pain and is able to "squeeze" it out rapidly. This condition can affect all organs and create a variety of symptoms, although there are some rarer, more specific forms of EDS that affect fewer than one percent of the population. Since I have gained knowledge about EDS, I have noticed it in many more people than I expected. It is possible that something related to human evolution is making it easier for people to switch into this condition. Of course, this is just my personal observation and time will tell if it holds true. Despite the existence of diagnostic criteria since 2017, EDS is still not widely recognized by medical professionals.
How can integrative care be applied to Ehlers-Danlos?
I am currently in a phase where I am trying to create protocols for Ehlers-Danlos patients. So, I can't tell you exactly how integrative medicine could be applied. For now, I'm basing my work on what a general practitioner would do. These patients present atypical symptoms. They are mostly followed by general practitioners or specialists who are not sufficiently informed. Unfortunately, these specialists often don't understand their patient's symptoms and end up telling them it's all in their head. A lot of Ehlers-Danlos patients report significant fatigue. This often leads to them being diagnosed with asthenia. I had a patient who had been undergoing medical examinations for two years. I ended up doing an evolutive hypnosis session to try to understand why she had a certain kind of pain and the cause of her fatigue. We got interesting results. Every patient is different in their symptoms and what causes them, so it's hard for me to answer your question. The idea is to understand first and then open up to other therapeutic possibilities.
Is there a specific type of therapy then that has proven very efficient?
As a healthcare provider, I have to take patients with Ehlers-Danlos based on their symptoms. Certainly when I see certain symptoms, I think of specific therapies. For example, fatigue. If I relate it to chronic inflammation, then I will look into micro-nutrition or naturopathy to provide more antioxidants, coenzymes, and a variety of dietary supplements to reduce inflammation. Although I'm not an expert in both fields, I know that my knowledge is enough to give the patient a boost. Using a psycho-emotional decoding, I have also observed that these patients are often hyper-empathetic, altruistic, and highly sensitive. They easily become emotionally overwhelmed. This information from my decoding could potentially give the patient insight into why they are dealing with Ehlers-Danlos. Note however, that not all patients are receptive so it doesn't always work. Still, my approach is based on the belief that everything has a meaning. So if we can consciously work on the psycho-emotional cause of the illness for instance, we have the potential to cure it, not just put it into remission.
What do you tell patients with whom you start this kind of procedures?
First, I try to take stock of the situation and see where my patients are at. Some of them have already tried complementary therapies. I explicitly tell them that what I'm trying to do is bridge the gap between conventional medicine and complementary medicines. Some patients I will push to take action for their health and others I let be. Maybe they need to hit rock bottom before they can motivate themselves. I can't promise a cure, but I tell my patients when I think it's possible and even when I'm just enthusiastic about potential results. I tell them we can talk and we can work together. That anything is possible, but that not everyone can recover from something. It's a start for them to hear this, as it removes any psychological barriers to healing. But then they have to make their own journey. They have to see where they are and how far they can go. Sometimes healing isn't about getting back all your faculties, but being at peace with your condition.