This article details research that has started looking into a certain type of joint support for people with symptomatic hypermobility, such as hypermobile Ehlers-Danlos syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD). The main part of this article focuses on our recent publication on the use of dynamic fabric supports for the hip joint. The end includes a little bit on the plans we have to examine the use of these dynamic fabric supports for the shoulder joint, examining in more detail how and if they work.
First of all though, let’s tell you more about us and the supports we are researching to provide some context. This research is led by Anna Higo, who has two main roles that come together to make this research work so meaningful. One is as a Physiotherapist who specialises in hypermobility and owns the Physiocure clinic in Leeds with her partner, Louise Grant. The other is as a Doctoral researcher at Coventry University as part of the hEDS Together team led by Dr Gemma Pearce. Dr Pearce is Anna’s main supervisor, alongside Professor Shea Palmer (Cardiff University) and Dr Behnam Liaghat (University of Southern Denmark), who are both also honorary members of Coventry University’s Research Centre of Healthcare and Communities with Gemma and Anna. Additionally, Anna and Gemma both have symptomatic hypermobility conditions themselves and so this is a personal passion as well as a professional one.
So, what are these supports? Their full description is Dynamic Elastomeric Fabric Orthosis (DEFO), so let’s break down what that means. ‘Dynamic’ allows for change, movement activity, and progress in the joint they are supporting. ‘Elastomeric Fabric’ means it is made from a material that has an elastic or rubber-like quality to allow movement of the joint. ‘Orthosis’ is the name for a device that supports a part of the body to stay aligned and protected while it is moving and functioning. DEFO can help to provide proprioceptive feedback, which is our ability to sense movement, action, and location through our neuromuscular system. So, we can sense where our body parts are in time and space, even if we have our eyes closed. The idea is that DEFO can help identify the best movement pattern for the joint and feed that back for future use. There are a few different types of DEFO and the specific one that we are researching is called Dynamic Movement Orthosis® (DMO). None of us receive funding from DM Orthotics Ltd to research these and so it is an independent examination of their use.
At Physiocure, they have found that their clinic patients report benefits from using the DMO® in certain conditions, one of which is to support the hip joint. They worked with Gemma and Shea to publish an example from one of their patients as a case study to inform others about their potential use in physiotherapy and condition management. The patient was a 22-year-old woman living in the UK who was referred to physiotherapy prior to hip surgery. She had bilateral developmental dysplasia of the hip, which is where the socket part of the ‘ball and socket’ hip joint does not properly form and cover the ball part adequately. This was on both hips and so she was scheduled to have surgery on the right side first, and then the left. The surgery is called periacetabular osteotomy, which aims to move the bones of the joint into more favourable positions, reduce the wear on them and keep the joint function where possible.
During physiotherapy, an in-depth history was taken, and her movement ability was assessed. The main issues to address in physiotherapy were the inability for her to improve hip function and strength because of the pain. She also had poor proprioceptive awareness and there were safety concerns because of her dizziness, light headedness and fainting episodes causing more issues with mobility. Additionally, this lack of function and mobility caused low mood. Firstly, the patient was referred to a rheumatologist who assessed her and provided the hEDS diagnosis. They also referred her to a cardiologist with suspected Postural Tachycardia Syndrome (PoTS). This helped the patient to feel listened to, understand her body better, explain her symptoms to others and helped build up trust with the physiotherapist.
For physiotherapy, a trial of the DMO® leggings was suggested to aid compression of the legs for the PoTS symptoms and provide proprioceptive feedback to help with the control of the posture. In the photo (A) below, it shows the patient had a sway back posture and hyperextension of the knees. She also had exercise tailored to support her core control, hip, legs, breathing and proprioception. These were paced for her needs to accommodate pain, chronic fatigue, and dizziness. All of this was carried out over the 16-weeks leading up to the first right hip surgery. In photo (B), you can see that the sway back and knee hyperextension is reduced when wearing the DMO® leggings. This improved posture could also be seen during movement, such as walking.
Following the 16-weeks of DMO® wearing and tailored exercise, the patient’s hip function had improved with a clinically important difference. The pain had reduced, and the patient felt more coordinated and stable wearing the DMO® leggings. Importantly, she felt this was what helped her to engage in the physiotherapy exercises to prepare for the surgery. Strength was increased in key hip muscles, and symptoms of light-headedness, dizziness and palpitations decreased.
Therefore, the main conclusion from this work is that within this case study example, the use of DMO® leggings helped the patient to do the exercise needed to better prepare for her surgery and reduced her symptoms. More research is now needed to examine whether this is the case for other people in other situations for different joints. If it is the case, then it is useful to examine the actual reason why these supports may help, and how they differ compared to other treatments or other support types.
Anna has started a programme of research for her PhD to examine the use of DMO® for symptomatic hypermobility of the shoulder joint. This is starting with a systematic review of the current literature on shoulder treatments and will go on to examine the mechanisms of how and if the DMO® works through laboratory-based and intervention studies. Anna has also recently won a public-nominated Community Champion Award from Ehlers-Danlos Support UK for her passion in raising awareness, supporting people and researching symptomatic hypermobility conditions.
You can find out more on Anna’s Doctoral research, as well as our other projects, on the hEDS Together website (www.hEDStogether.com) under the ‘projects’ tab. You can also follow our live updates on Twitter @hEDStogether and Instagram @hEDS_together.
Reference to the case study publication
Higo, A., Pearce, G., Palmer, S. & Grant, L. (2023) The value of Dynamic Movement Orthoses in the management of a complex Hypermobile Ehlers-Danlos Syndrome patient: a case report. Clinical Case Reports, 11(1) https://doi.org/10.1002/ccr3.6821
This is extremely interesting. my daughter was diagnosed with BHMS 13 years ago at age 35. After the birth of her daughter 3 years later she's having more difficulties. One of the main problems is her right hip, so this article and the probability of being available sounds optimistic.