Hypermobility Physio
Flexibility - an asset and a challenge?
Connected Health Alliance
Together with Dr Megan Thomas, GP, and Savita Sandhu, Dietitian, Nicole has founded a clinical network to provide coordinated multidisciplinary care for people living with EDS/HSD and related conditions. The network provides collaborative multidisciplinary patient care to improve individual outcomes, increase access to quality care, perform clinical research, and deliver medical education for the EDS community and those that care for them.
We regularly engage in case conferences and provide peer support, consultation advice, and education for clinicians working in this space.
Clinicians are encouraged to contact us if interested in networking or improving knowledge in the management of EDS & related conditions.
A large proportion of Flex-Ability Physio’s patients are hypermobile. But what's different about physio for someone who's hypermobile?
The term hypermobility refers to flexibility significantly greater than the average. Some people may recognise their hypermobility and call themselves “bendy” or “double jointed”. Many individuals who are hypermobile will benefit from the advantages this brings and excel in a range of sports and performing arts, utilising their extreme flexibility as an asset, and may never experience any negative consequences of their flexibility.
Hypermobility can, however, present a range of challenges that differ from or present more commonly than those faced by individuals who are less flexible. A diagnosis of Hypermobility Spectrum Disorder (HSD) may be given where an individual has a range of musculoskeletal manifestations (including pain, recurrent injuries, disturbed position sense (“proprioception”) or body alignment problems (such as scoliosis or flattened feet)) associated with their hypermobility. In some individuals a different diagnosis identifying specific genetic mutations causing the hyper mobility may be given, including Marfan Syndrome, Osteogenesis Imperfecta, or Ehlers Danlos Syndrome (EDS) variants. There are 12 different types of EDS associated with specific genetic variations that impact the formation of connective tissues in the body, and a 13th type (Hypermobile EDS, hEDS) for which a specific genetic variation has not yet been identified (1). These diagnoses are sometimes collectively referred to as Heritable Disorders of Connective Tissue (HDCT) meaning that they tend to run in families, being inherited genetically.
As connective tissue is found throughout the body, not just in the musculoskeletal system, individuals with HDCTs may experience a broad range of symptoms related to their connective tissue variations. These can include issues with the gastrointestinal, neural and genito urinary systems, skin and nearly any other internal organ. While most of the HDCTs are considered rare diseases in which life expectancy is normal, in some of the rarest forms life threatening complications can occur. If one of these specific HDCTs are suspected, then further assessment may be advised in order to identify any potential risks early allowing preventative management to be put in place.
So what can physio do?
The body of research into the most effective treatments for hypermobile individuals continues to grow. Physical therapies such as Physio and Occupational Therapy are considered to “play a central role in management of individuals with hypermobility related disorders”(2). A physio who understands hypermobility syndromes, can work with hypermobile individuals to help them understand their condition in order to be able to look after themselves most effectively, and develop a treatment plan to assist the individual to manage pain, fatigue and other symptoms and work towards their goals, considering the specific issues faced by the patient.
Often hypermobile patients report negative outcomes of therapies they have tried (3, 4). This is really not surprising if treatment has not considered their hypermobility and the therapist and/or the patient expected them to respond and progress like someone with a non-hypermobile body structure and physiology. Unfortunately, research has shown lack of knowledge amongst clinicians of the diagnostic criteria and specific considerations for effective treatment of hypermobility related disorders (2). When treatment is tailored to the individual, considering their unique anatomy and physiology, physiotherapists can work with hypermobile individuals in building their strength, control, endurance, functional abilities and managing pain, fatigue and other related symptoms (2, 5).
Nicole has been assessing and treating hypermobile individuals throughout her career and continues to pursue further education and read widely from the scientific literature in order to maximise her clinical knowledge and skills to assist these clients. She has also coauthored a journal article on management of upper cevical instability in hypermobility with an international committee of clinical experts and presented on the topic at the Australian Physiotherapy Association (APA) 2023 conference, written for the APA and Physio Network on a little known condition related to HDCTs, Spontaneous Intracranial Hypotension, and for NOIJam on the complexities of chronic pain in symptomatic hypermobility. Nicole has been a guest lecturer and program faciltator on the Ehlers Danlos Society's Project ECHO professional development program.
Nicole enjoys working with hypermobile clients with both simple and complex issues. If you don't happen to have a physio in your area who is fully educated in all in the aspects of managing the hypermobile body, Nicole can work with your local physio to coordinate a customised management plan that works best for you. Please contact us to discuss how best this can be achieved in your specific circumstances.
For more detailed information about specific aspects of hypermobility issues, please check out our blog.
References:
1. Malfait F, Francomano C, Byers P, Belmont J, Berglund B, Black J, et al. The 2017 international classification of the Ehlers–Danlos syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2017;175(1):8-26.
2. Engelbert RHH, Juul-Kristensen B, Pacey V, de Wandele I, Smeenk S, Woinarosky N, et al. The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2017;175(1):158-67.
3. Rombaut L, Malfait F, De Wandele I, Cools A, Thijs Y, De Paepe A, et al. Medication, surgery, and physiotherapy among patients with the hypermobility type of Ehlers-Danlos syndrome. Archives of physical medicine and rehabilitation. 2011;92(7):1106-12.
4. Palmer S, Terry R, Rimes KA, Clark C, Simmonds J, Horwood J. Physiotherapy management of joint hypermobility syndrome–a focus group study of patient and health professional perspectives. Physiotherapy. 2016;102(1):93-102.
5. To M, Alexander CM. Are people with joint hypermobility syndrome slow to strengthen? Archives of physical medicine and rehabilitation. 2019;100(7):1243-50.
Other Resources:
https://www.ehlers-danlos.com/
https://www.schn.health.nsw.gov.au/fact-sheets/joint-hypermobility
Flexibility - an asset and a challenge?
Connected Health Alliance
Together with Dr Megan Thomas, GP, and Savita Sandhu, Dietitian, Nicole has founded a clinical network to provide coordinated multidisciplinary care for people living with EDS/HSD and related conditions. The network provides collaborative multidisciplinary patient care to improve individual outcomes, increase access to quality care, perform clinical research, and deliver medical education for the EDS community and those that care for them.
We regularly engage in case conferences and provide peer support, consultation advice, and education for clinicians working in this space.
Clinicians are encouraged to contact us if interested in networking or improving knowledge in the management of EDS & related conditions.
A large proportion of Flex-Ability Physio’s patients are hypermobile. But what's different about physio for someone who's hypermobile?
The term hypermobility refers to flexibility significantly greater than the average. Some people may recognise their hypermobility and call themselves “bendy” or “double jointed”. Many individuals who are hypermobile will benefit from the advantages this brings and excel in a range of sports and performing arts, utilising their extreme flexibility as an asset, and may never experience any negative consequences of their flexibility.
Hypermobility can, however, present a range of challenges that differ from or present more commonly than those faced by individuals who are less flexible. A diagnosis of Hypermobility Spectrum Disorder (HSD) may be given where an individual has a range of musculoskeletal manifestations (including pain, recurrent injuries, disturbed position sense (“proprioception”) or body alignment problems (such as scoliosis or flattened feet)) associated with their hypermobility. In some individuals a different diagnosis identifying specific genetic mutations causing the hyper mobility may be given, including Marfan Syndrome, Osteogenesis Imperfecta, or Ehlers Danlos Syndrome (EDS) variants. There are 12 different types of EDS associated with specific genetic variations that impact the formation of connective tissues in the body, and a 13th type (Hypermobile EDS, hEDS) for which a specific genetic variation has not yet been identified (1). These diagnoses are sometimes collectively referred to as Heritable Disorders of Connective Tissue (HDCT) meaning that they tend to run in families, being inherited genetically.
As connective tissue is found throughout the body, not just in the musculoskeletal system, individuals with HDCTs may experience a broad range of symptoms related to their connective tissue variations. These can include issues with the gastrointestinal, neural and genito urinary systems, skin and nearly any other internal organ. While most of the HDCTs are considered rare diseases in which life expectancy is normal, in some of the rarest forms life threatening complications can occur. If one of these specific HDCTs are suspected, then further assessment may be advised in order to identify any potential risks early allowing preventative management to be put in place.
So what can physio do?
The body of research into the most effective treatments for hypermobile individuals continues to grow. Physical therapies such as Physio and Occupational Therapy are considered to “play a central role in management of individuals with hypermobility related disorders”(2). A physio who understands hypermobility syndromes, can work with hypermobile individuals to help them understand their condition in order to be able to look after themselves most effectively, and develop a treatment plan to assist the individual to manage pain, fatigue and other symptoms and work towards their goals, considering the specific issues faced by the patient.
Often hypermobile patients report negative outcomes of therapies they have tried (3, 4). This is really not surprising if treatment has not considered their hypermobility and the therapist and/or the patient expected them to respond and progress like someone with a non-hypermobile body structure and physiology. Unfortunately, research has shown lack of knowledge amongst clinicians of the diagnostic criteria and specific considerations for effective treatment of hypermobility related disorders (2). When treatment is tailored to the individual, considering their unique anatomy and physiology, physiotherapists can work with hypermobile individuals in building their strength, control, endurance, functional abilities and managing pain, fatigue and other related symptoms (2, 5).
Nicole has been assessing and treating hypermobile individuals throughout her career and continues to pursue further education and read widely from the scientific literature in order to maximise her clinical knowledge and skills to assist these clients. She has also coauthored a journal article on management of upper cevical instability in hypermobility with an international committee of clinical experts and presented on the topic at the Australian Physiotherapy Association (APA) 2023 conference, written for the APA and Physio Network on a little known condition related to HDCTs, Spontaneous Intracranial Hypotension, and for NOIJam on the complexities of chronic pain in symptomatic hypermobility. Nicole has been a guest lecturer and program faciltator on the Ehlers Danlos Society's Project ECHO professional development program.
Nicole enjoys working with hypermobile clients with both simple and complex issues. If you don't happen to have a physio in your area who is fully educated in all in the aspects of managing the hypermobile body, Nicole can work with your local physio to coordinate a customised management plan that works best for you. Please contact us to discuss how best this can be achieved in your specific circumstances.
For more detailed information about specific aspects of hypermobility issues, please check out our blog.
References:
1. Malfait F, Francomano C, Byers P, Belmont J, Berglund B, Black J, et al. The 2017 international classification of the Ehlers–Danlos syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2017;175(1):8-26.
2. Engelbert RHH, Juul-Kristensen B, Pacey V, de Wandele I, Smeenk S, Woinarosky N, et al. The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2017;175(1):158-67.
3. Rombaut L, Malfait F, De Wandele I, Cools A, Thijs Y, De Paepe A, et al. Medication, surgery, and physiotherapy among patients with the hypermobility type of Ehlers-Danlos syndrome. Archives of physical medicine and rehabilitation. 2011;92(7):1106-12.
4. Palmer S, Terry R, Rimes KA, Clark C, Simmonds J, Horwood J. Physiotherapy management of joint hypermobility syndrome–a focus group study of patient and health professional perspectives. Physiotherapy. 2016;102(1):93-102.
5. To M, Alexander CM. Are people with joint hypermobility syndrome slow to strengthen? Archives of physical medicine and rehabilitation. 2019;100(7):1243-50.
Other Resources:
https://www.ehlers-danlos.com/
https://www.schn.health.nsw.gov.au/fact-sheets/joint-hypermobility