Hannah Ensor has Hypermobility Type Ehlers Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). She is a cartoonist and runs her own company, Stickman Communications. A bright sense of humour and tenacious ambition have seen her turn her stickman characters, used to communicate how she was feeling during a time in hospital, into a unique and creative business helping people worldwide better understand disability.
Below, Hannah describes her experience of using Dynamic Movement Orthoses, how she no longer needs medication for her conditions and how she is able to independently run her own business according to her own schedule.
I discovered DM Orthotics 3 years ago and can honestly say, being introduced to their products has completely changed my life.
I have EDS and POTS. EDS means my ligaments and connective tissues are too stretchy, so when I’m relaxed my joints easily come out of place and movement requires significantly more energy. I experience a lot of joint pain and fatigue and have very low levels of proprioception (knowing where my body is in space). It also means my veins are also too stretchy so my blood pools in my stomach and legs – causing POTS which in turn causes debilitating symptoms such as tachycardia, light-headedness, fainting, fatigue, and cognitive problems like ‘brain fog’ and difficulty concentrating.
I had the symptoms of EDS for a long time and was diagnosed about 10 years ago when I became disabled by it. My EDS meant that I always had a low level of POTS symptoms but it became a lot worse during this time.
My POTS management involved injections every three weeks, a specific diet and wearing conventional compression stockings and a cooling vest, exercise and lying down frequently to try and manage the blood pooling issues.
Although this helped it was not ideal. The injections were painful and the medication could take a week to become fully effective, peaking for about a week and then wearing off again. My symptoms varied hugely and I struggled to ‘pace’ my activities – it was like the goalposts were constantly moving, and I often couldn’t do the exercises essential to managing my EDS. I often missed out on things because they happened at the wrong point in my medication cycle.
I managed to receive funding for my DMO’s through my local CCG [Clinical Commissioning Group]. I created a case and managed to convince my CCG of the predicted benefits of using DMO’s over continuous courses of medication to treat my POTS. In addition the cost of providing me with DMO’s was roughly 25% of the cost of the medication I was taking and would probably be more effective.
When I first tried my DMO it was like ‘coming home’ – all of a sudden, I knew where all of me was, it was like ‘all of a sudden I’m ALIVE!’ My DM Orthotics clinician prescribed me DMO Leggings, T-shirt, Socks and full-length Gloves. It turned out that my wrists couldn’t tolerate wearing the gloves, but the rest was fabulous. The enhanced proprioception meant I had awareness of the whole of my body – it was awesome! The improvement in sensation was instantaneous – it was really quite unbelievable. Without DMOs, controlling all my joints well enough to walk, while my POTS symptoms increase due to blood pooling is like tight rope walking whilst drunk. With my full DMO outfit I can walk a few metres and talk at the same time – trust me, this is totally awesome!
I can’t wear my DMO’s all the time as my condition also makes my skin fragile, but having them means I can plan my week so I get the most out of my DMO’s and consequently, the most out of my life.
Within one month of getting the DMO’s I entirely stopped all medication for my POTS.
The use of the DMO’s has given me so many more possibilities in life. They have helped me learn to move with good posture which helps with some of my EDS symptoms. I am stronger and fitter, and can cope better with being out of my house for several hours at a time. I’m still reliant on my wheelchair, I still have POTS and EDS, I still have to pace my days carefully and manage a complex set of symptoms, but my DMOs are a tool I wouldn’t be without – I no longer have to plan my life around a medication cycle, I can socialise and work to my own schedule; my DMOs have given me back control.
Hannah Ensor testimonial – the clinical perspective
Liz Betts – Clinical Specialist Physiotherapist
Hannah is a very interesting case. Ehlers Danlos Syndrome means without aid she is very unstable and is prone to a number of symptoms. This adds to her POTS increasing its prepotency. The use of multiple DMO’s would not only improve her stability and proprioception but also improve her blood circulation, alleviating some of the blood pooling and low blood pressure symptoms.
When I first saw her she was very unstable and could only walk a few metres by holding on to things. We needed to stabilise her whole body as well as increase her proprioception throughout. I prescribed DMO Leggings, DMO T-shirt and DMO Gloves and DMO Socks. We opted for single items as opposed to a full suit as it would give her greater versatility and flexibility of movement.
She loved the feeling the Dynamic Movement Orthoses gave her when she first tried them on. They had an automatic effect on her stability and her proprioception. She had a lot more balance and could walk unaided for a few metres. She was no longer so heavily reliant on her compensations and even managed to walk and talk at the same time – an outstanding change and achievement for someone as severely affected as Hannah.
“When I first tried my DMO it was like ‘coming home’ – all of a sudden, I knew where all of me was, it was like all of a sudden I’m ALIVE!”