Navigating Life with Ehlers-Danlos Syndrome: The Role of Exercise and Functional Patterns Brisbane
Ehlers-Danlos syndrome (EDS) presents a labyrinth of challenges that significantly impact one's quality of life. Unravelling effective strategies to manage this complex connective tissue disorder is crucial. In this article, we explore the common manifestations of Ehlers-Danlos syndrome, the imperative for specialised physical training, and how Functional Patterns can revolutionise your approach to living with EDS.
Understanding Ehlers-Danlos Syndrome:
Ehlers-Danlos Syndrome encompasses a cluster of conditions marked by joint hypermobility, skin elasticity, and a spectrum of other symptoms. A profound understanding of EDS and its various subtypes is essential. One particularly enlightening article, "23 Signs You Grew Up With Ehlers-Danlos Syndrome," sheds light on this condition by highlighting a series of indicators and lived experiences of those affected.
To Summarise The Article
Types of Ehlers-Danlos Syndrome
There are 13 types of Ehlers-Danlos syndromes (EDS), most of which are rare.
Hypermobile EDS (hEDS) is the most common type. Symptoms of hEDS include:
Joint hypermobility
Unstable joints prone to dislocation
Clicking and pain in the joints
Easy bruising of the skin
Digestive issues such as heartburn
Dizziness and increased heart rate when standing up
Urinary incontinence
There are no specific diagnostic tests for hEDS. Diagnosis is typically based on a patient's history, symptoms, and physical examination.
Other relatively common types of EDS are classical, vascular, and kyphoscoliotic EDS.
Is Ehlers-Danlos Syndrome Genetic?
Ehlers-Danlos syndrome is a genetic condition, with over 20 associated genes identified. Some of these genes include:
COL1A1
COL1A2
COL3A1
COL5A2
These genes are responsible for producing different types of collagen. Variants in these genes can disrupt collagen production or processing, leading to weak bones, skin, and other tissues, which are characteristic features of Ehlers-Danlos syndrome. Each type of EDS is linked to variants in different collagen genes. For instance:
Variants in the COL5A1, COL5A2, and sometimes COL1A1 genes cause classical EDS.
Variants in the TNXB gene cause classical EDS and some cases of the hypermobile type.
Variants in the COL1A2 gene cause vascular EDS and some cases of arthrochalasia.
23 Signs You Grew Up With Ehlers-Danlos Syndrome
Hypermobile joints, frequent bruising, and painful joints are common symptoms of EDS. While these symptoms may be related to other underlying conditions for some, they can indicate Ehlers-Danlos syndrome in others.
Here are 23 signs of Ehlers-Danlos syndrome:
High flexibility of joints
Clumsiness
Frequent tripping or falling
Frequent joint dislocations, especially of the knee or elbow
Ability to bend fingers or thumb backward
Increased frequency of bone fractures
Hyperextended knees
Feeling double-jointed
Fear of relaxing joints due to potential dislocation
Frequent dizzy or fainting spells
Fewer wrinkles
Frequent foot problems, especially pain and discomfort
Digestive issues like bloating, diarrhea, nausea, and acid reflux
Extreme fatigue
Holding a pen or pencil differently to avoid pain, discomfort, or dislocation of finger joints
Taking longer to complete everyday activities
Increased likelihood of migraines, vision issues, or postural orthostatic tachycardia syndrome (POTS)
Chronic body pain at a young age
Running with a different gait than others
Being picky about clothing to protect sensitive skin
Joints making clicking or popping noises
Growing pains in the ankles
Inability to run fast
Movement-based Challenges of Ehlers-Danlos Syndrome in Gait Patterns:
Recent studies underscore the profound biomechanical implications EDS imposes on an individual’s gait. One pivotal study quantified the gait strategies of adults with joint hypermobility syndrome/Ehlers-Danlos syndrome, utilising meticulous Gait Analysis. The study unveiled that individuals with EDS adopt a non-physiological gait pattern, characterised by a reduced anterior step length and prolonged stance phase duration.
More intricately, the kinematic anomalies primarily involved the pelvis, distal joints, and the ankle, whilst the hip and knee joints surprisingly retained physiological values. Kinetic assessments revealed diminished peak values at the ankle during terminal stance. Significantly, the study highlighted a decrease in stiffness at the hip and ankle joints, attributable to inherent hypotonia and ligament laxity. These biomechanical insights are invaluable, elucidating the complexities individuals with EDS navigate and underscoring the need for a tailored, multi-dimensional approach to their evaluation and management.
Addressing EDS Symptoms with Functional Patterns:
Conventional physical therapy often falls short in addressing the unique challenges posed by EDS. The methodology of Functional Patterns (FP), however, has emerged as a transformative approach. This training modality, though unconventional, has a track record of improving various symptoms associated with EDS, attributed to its emphasis on correcting postural and movement inefficiencies integral to the condition.
One notable testament to the effectiveness of FP is Ryan’s journey. Diagnosed with EDS, Ryan grappled with chronic pain across multiple joints. Under the guidance of FP practitioner Victor Kravutske, Ryan experienced significant improvements in posture and pain reduction, achievements inadequately addressed by other therapies he had previously explored, including yoga and traditional physiotherapy.
The Importance of Movement Pattern Optimisation in Managing EDS:
The key to EDS management is not merely about addressing symptoms but understanding and rectifying the underlying biomechanical inefficiencies. Functional Patterns excels in this regard, offering a comprehensive strategy that fortifies one's postural integrity and movement capabilities, irrespective of age or fitness level.
The FP methodology introduces the 'Big Four' primal movements: standing, walking, running, and throwing. These foundational patterns are pivotal in addressing the myriad symptoms associated with EDS. The emphasis on natural, efficient movement patterns not only challenges the body but also fosters a reconditioning that leads to smoother, pain-reduced motion.
Conclusion:
Ehlers-Danlos Syndrome, with its complexities, demands more than superficial solutions. The insights gleaned from advanced gait analyses accentuate the need for an exercise and therapy approach informed by a deep understanding of the condition's biomechanical intricacies. Functional Patterns training stands as a beacon of hope, offering methodologies that cater to these specific needs. By realigning focus on natural human movement and addressing biomechanical and gait irregularities head-on, individuals with EDS can forge a path towards a life defined not by limitations, but by greater stability, reduced pain, and enhanced life quality.