May is EDS Awareness Month post 6

May is EDS Awareness Month, I am a little late to the party as I had pretty serious Neurosurgery on the 9th May so I am still in the early stages of recovery but I am going to contribute the best I can and will do 31 days of blog posts which will take me into June.


I will be answering @taylers.danlos.syndrome‘s 31 EDS Awareness Month Challenge questions, inter-cut with photos and EDS titbits. Go back to post 1 to see the 31 questions in full.


***Disclaimer*** Nothing on these posts should be taken as medical advice, I am speaking from personal experience.



Photo taken by @OscarVinter

[#imagedescription a photo of Charlie, wearing a jean dress, bear legs and a green and brown cap with a short pony-tail holding sunglasses, she is pictures side on, sat in a black and grey self-propel wheelchair. She is frowning and looking towards the ground, she is at the edge of a small football field in a park. The park is surrounded by a brown fence and trees. Across the bottom of the photo is a semi-transparent white banner with writing in black font, 'Do you use mobility aid']



6. Do you use mobility aids?


Yes, I have a cane, a walker/rollator and a wheelchair which also has an electric add-on. I am an ambulatory wheelchair user, which means I can walk to varying degrees, my legs are not paralysed. But I use a wheelchair due to a lack of energy, to avoid injury, due to frequent disslocations, to avoid pain, because of severe spine issues, due to POTS symptoms and so on. A huge amount of wheelchair users are ambulatory wheelchair users and it often may benefit them or be important to their health to stand at moments throughout the day, use their wheelchair as a walker for parts of the day or stretch their legs. However, popular culture represents a very narrow understanding of wheelchair use as being only for people who can not physically walk at all. The fake wheelchair user is a tantalizing but extremely damaging trope often used in tv drama's.


Due to the perpetuation of this inaccurate idea of wheelchair use ambulatory wheelchair users, if they are seen to stand out of their wheelchair or move their legs in public spaces are often accused of faking their disability. The trope of 'fake' wheelchair users in tv shows and films is very damaging to the daily lives of many ambulatory wheelchair users who are often afraid to display their full range of mobility to the detriment of their own health. For example, my wheelchair allows me to have greater access to appointments or longer days out when my health is bad and my joints are dislocating or I am in severe pain, but as I am a high risk for blood clotting sitting in my wheelchair the whole day without moving my legs or standing up can be dangerous.


There was a social media campaign with the hashtag #AmbulatoryWheelchairUsersExist started by chronic illness and disability advocate Annie Elainey that challenged the narrow perception of how wheelchairs are used.


The inaccessibility of UK paths:


Before my surgery I was using my wheelchair whenever I left the house, but I was mostly being pushed by my partner as I was too sick to really use the electric controls myself and the streets in the UK are mostly not accessible so most journey's I would of not been able to use the electric wheelchair safely. A street that might look accessible often isn't, in my experience many of the lips on the path at the points in which you cross the street are not flush to the road and therefor you need someone pushing your chair who can safely manoeuvre you over these points, when using my self-propel or electric add-on wheelchair I have often fallen back on my tippers and had to be assisted by bystanders. There is also either a huge lack of awareness or lack of care by many drivers as to how important these lips in the path are to mobility aid users, as there are often vehicles parked at these points in the road making the street inaccessible. The paths themselves are often full of potholes, uneven surfaces and too narrow or with overgrown trees and bushes, or covered in broken glass, again making them not safely accessible to many mobility aid users.


People with EDS, myself included often have a fluid, daily changing disability. Depending on chronic fatigue, dislocations, symptoms flaring and so on our disability can look very different day-to-day or even hour-to-hour. Having the freedom to use or not use a variety of mobility aids to best manage our symptoms and access what we need to access makes the most sense for our specific needs. Mobility aids need to be viewed as a positive addition to our lives and a tool for flexible use. Unfortunately most people do not view mobility aids in this way yet, the negative ideas around mobility aid use can stop people from using them at all or in a way that benefits their life and overall wellness. It took me a very long time to realise that I could use mobility aids, I missed out on a lot because I didn’t really understand that my chronic illness was a disability. And I am still not quite at the point at which I feel fully comfortable to use mobility aids flexibly without feeling the need to perform disability in public spaces due to the fear of confrontation or aggression if I appear to be ‘able-bodied’ in the very narrow understanding of what that is whilst using a mobility aid.


The other issue that arise from having a fluid and changing disability is access to mobility aids, many people with EDS have hand, arm, shoulder and rib issues or severe fatigue or pain, with frequent dislocations making self-propelling extremely difficult, sometimes impossible. But When I tried to access an electric wheelchair in the UK I was told you can not be an ambulatory wheelchair user, you have to be unable to walk all the time to access an electric wheelchair. My family fundraised for my electric add-on, which when I am up to using it and I am in an area in which I can use it, i.e. a train station or a shopping centre (places that are generally accessible) it gave me back a level of independence extremely important for my mental wellbeing.


I created the hashtag #ILoveMyMobilityAid to try and reclaim and reframe mobility aid use as the positive tool it has the potential to be and already is in so many disabled people's lives. If you want to do the same please use the hashtag and post pics or stories about how your mobility aid has had a positive impact on your life.


This is an issue I could probably write a dissertation length piece on, so for now I will stop there and go on to the EDS titbit. For more on this checkout a piece I wrote for The Mighty last year when I started using mobility aids: https://themighty.com/2018/06/navigating-the-space-between-visible-and-invisible-disability/


EDS titbit or tidbit as the Americans say: As I mentioned in the previous post the current classifications for EDS recognises and names 13 distinct types of Ehlers-Danlos Syndromes. The next 13 posts will use the EDS titbit to give a brief description of each one.


Hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorder

is believed to be the most common subtype of EDS, the current figures stating it affects least 1 in 5000 however there is a common belief among EDS specialist and patient experts that there is not enough research in this area, that most people are undiagnosed and that it is likely far more common, just rarely diagnosed.


Although hEDS is believed to be one of the less severe types of EDS it is on a spectrum, some people are affected very mildly, some more severely and some extremely severely where they experience severe disability and life-threatening complications. I have been told by my neurosurgeons that I am at the severest end of the spectrum if my hEDS diagnosis is correct.

‘Recently some changes were made to the way hypermobile Ehlers-Danlos syndrome is diagnosed. There is no test for hEDS, so diagnosis involves looking for joint hypermobility, signs of faulty connective tissue throughout the body (e.g. skin features, hernias, prolapses), a family history of the condition, and musculoskeletal problems (e.g. long-term pain, dislocations). There are many associated symptoms and disorders which don’t form part of the formal criteria, and which do not directly result from joint hypermobility, for instance orthostatic tachycardia, digestive disorders, pelvic and bladder dysfunction, and anxiety disorders. These are often more detrimental to quality of life than the joint symptoms.’ (https://www.ehlers-danlos.org/what-is-eds/information-on-eds/hypermobile-eds-and-hypermobility-spectrum-disorders/)


This is an extremely brief overview of a very complex condition, which can affect many systems in the body for a thorough exploration of Hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorder I have found the book ‘Understanding Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder’ by Claire Smith extremely helpful and a great tool from getting the most out of doctors appointments.


hEDS is the only subtype of EDS in which no gene mutation has been identified as the the cause of the condition. However, In February 2018 The Ehlers-Danlos Society, based in America announced an anonymous donations of 1 million dollars which as stated by the donor will fund ‘the most comprehensive, collaborative effort to date in seeking to understand the underlying causes of hypermobile Ehlers-Danlos syndrome at the level of genes and gene expression.’


See the references for more details:

https://www.ehlers-danlos.com/2017-eds-classification-non-experts/hypermobile-ehlers-danlos-syndrome-clinical-description-natural-history/


https://www.ehlers-danlos.com/pdf/2017-FINAL-AJMG-PDFs/Tinkle_et_al-2017-American_Journal_of_Medical_Genetics_Part_C-_Seminars_in_Medical_Genetics.pdf

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