Common presentations and Co-Morbidities:
The Ehlers-Danlos syndromes (EDS) constitute a collection of 13 inheritable disorders related to connective tissue. These disorders stem from genetic mutations impacting connective tissue integrity. Each EDS type displays unique characteristics outlined by specific diagnostic benchmarks, with the most common type being Hypermobile EDS (hEDS). Common characteristics include joint hypermobility, skin pliancy, and tissue frailty which are consistently present across all variants of EDS.Hypermobility Spectrum Disorders (HSD) encompass a group of connective tissue conditions characterized by excessive joint flexibility, leading to joint instability, susceptibility to injuries, and discomfort. Additionally, individuals with HSD frequently experience a range of associated health concerns such as fatigue, headaches, gastrointestinal disturbances, and dysfunction of the autonomic nervous system.
Individuals with Ehlers-Danlos syndromes (EDS) and Hypermobile Spectrum Disorder (HSD) often experience a range of comorbidities, which are additional medical conditions that can coexist alongside EDS or HSD. Some common comorbidities associated with EDS and HSD include Chronic pain, Dysautonomia, Gastrointestinal issues, Cardiovascular issues (not common in HSD), Chiari Malformation (common in Cranio-cervical instability), headache and/or migraines, joint hypermobility resulting in dislocations and subluxations, fatigue, depression and anxiety, Mast Cell Activation Syndrome, and joint degeneration.It's important to note that the severity and specific comorbidities can vary widely among individuals with different types of EDS and HSD. Management typically involves a multidisciplinary approach with specialists in areas such as genetics, rheumatology, pain management, cardiology, and physical therapy.
Program background:
Through our early work with patients living with Chronic Fatigue and Pain, we started to notice more and more comorbidities of dysautonomia (OI and POTS), as well as joint hypermobility. Over the years, it became more and more prominent this was indeed an area our team at Active Health Clinic would need to learn more in, in order to understand the complexities of various connective tissue disorders and further assist this population on how to take control of their health journey.
Our AHC program:
Our program consists of approximately 10-15 individual sessions over 6 -18 months. It is designed and focused on long-term management of connective tissue disorders, and helps our clients make and maintain gains, through a holistic approach. The sessions focus on:
- EDS/HSD neurophysiology and pathophysiology
- Common comorbidities and management strategies as applicable
- Activity stabilization and pacing
- Setting an appropriate and safe movement/exercise routine (if/when applicable)
- Goal setting and forward planning daily activities
- Sleep physiology and hygiene
- Identifying triggers and developing a setback plan
- Stress and anxiety management
- Symptom mapping
- Addressing nutritional needs (if applicable)
- Understanding hormones and managing the cycle (if applicable)
- OI/POTS management (if applicable)
- Sensitization and pain education (if applicable)
- Mindfulness techniques and management (if applicable)
- Strength training (if applicable)
- Pilates (if applicable)
- Yoga (if applicable)
Our program aims to help you establish a ‘normal day’ or return to work, university or school, and day to day life.
Through pacing and gradual return to activity, we are able to slowly and confidently build your capacity, without increasing your symptoms. We know this journey is a bit rocky so we give you the skills to deal with any future hurdles, through setback planning and providing you with a therapy manual you can turn to in times of need.
Dietetics in Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD):
Those living with HSD and EDS can experience a range of different symptoms in many different systems of the body. These commonly include a range of gastrointestinal symptoms, such as difficulty swallowing, reflux, nausea, early satiety, bloating, abdominal pain, constipation or diarrhoea, just to name a few. Our dietitians understand the link between HSD and EDS and the gastrointestinal system, and how this can impact your ability to consume food. They will support you with managing these symptoms while also ensuring you are doing the best that you can to get the nutrients your body needs, which can be particularly challenging when these symptoms present. Some topics that may be covered with a Dietitian to support you and your body when living with HSD and EDS include:
- Strategies to assist with the management of gastrointestinal symptoms - using food based approaches and/or other nervous system based strategies.
- Support with weight restoration, stability and maintenance, when appropriate.
- Understanding appetite and support with regular eating to support nutritional adequacy.
- Support with making food more accessible and fatigue friendly
- Eating patterns to improve energy levels and support overall wellbeing.
