Visible and invisible disabilities - May is Ehlers-Danlos Syndromes awareness month

Was watching a fitness inspiration video today and came to realize that these quotes, articles, courses and so on about fitness, are mainly addressed to able bodied, reasonably healthy people and therefore the language used is targeted towards that group. Understandable, it makes total sense.

The usual motivator used to inspire people into taking action, getting off their buts and exercise is that it is a ' Choice' and it is! For most healthy folks out there, they have a choice between feeling weak and out of shape or feeling strong and fit. This can apply even for physically challenged people as the Paraolympics have so wonderfully proven.

This unfortunately is not the case for people with chronic or congenital disorders that render them unable to engage in any form of exercise. Disorders that affect the muscles, nervous system and/or connective tissue, joints etc Things such as MS, Ehlers-Danlos Syndromes, Hypermobility Syndromes, Myalgic Encephalitis, Chronic Fatigue Syndrome, the list is long...

Some of these are called 'invisible disabilities' for a reason, the people afflicted do not always look sick, they look like the average person. They may even be able to walk and go about their every day chores. Some of them are able to work, most of them part time, yet a large number of them cannot even manage a couple of hours. 

Some of these disorders have unpredictable symptoms that may change from one day to the next depending on whether the person is having a 'flare' or a good day. Some of them may even need a wheelchair on certain days but not on others. This is why they are so often accused of lying, or being lazy, of not trying hard enough, resulting in them giving up and/or feeling dismissed and alienated.

The reason for this is the lack of awareness for these conditions, even in the medical field itself. Doctors learn about these disorders in their medical text books, but because they are relatively rare or not researched enough, they know virtually nothing in order to be able to diagnose someone suffering from them let alone treat them. The result being these people may go undiagnosed for decades, some of them their whole life!

This is exactly the case with Ehlers-Danlos Syndromes. May by the way is EDS awareness month. It is nearly over yet EDS patients will have to keep on fighting, some of them for their very lives. Such is the case for Melanie for example, lying on a hospital bed as we speak in Spain after having had an extensive surgery to fuse her neck and spine as she was in imminent danger of suffering an internal decapitation due to extreme laxity of her joints and tissues!

Others like little Bethanie from the UK had to be put in a Psychiatric ward for two years before finally doctors accepting the specialist's diagnosis of Ehlers Danlos Syndrome and have her released so that she could finally get proper care! Bethanie's symptoms started after a tonsillectomy which caused her to be unable to swallow her food after that and doctors for two years held this girl away from her family and friends because they believed it was all in her head...

Yet other families even have their children taken away from them! Parents of children with EDS who take their kids to hospital after them suffering a spontaneous bruising or injury that can not be explained end up being prosecuted for child abuse and have their children taken away. Families end up being broken up due to ignorance and lack of awareness and education about these disorders which are the cause of their suffering.

Thousands of EDSrs around the world will be accused of lying on any single day, be told by doctors that their symptoms are all in their head and they just need to exercise more, be treated in ignorant and dismissive ways, be left to suffer for hours on end in hospitals or doctors offices, be given the runaround to see different specialists, have nasty notes left on their car because they 'dare' park in and use a disabled persons parking space when they can walk... Be misunderstood by family and friends, looked upon with suspicion, be questioned, accused, bullied, mocked, rejected and alienated.

All this because of having a rare, congenital condition that is characterized by hypermobility and laxity of the joints, weakness of the muscles and affects the connective tissues in the whole body with a large array of symptoms and multi systemic expression. It affects connective tissues in the skin, bones, blood vessels, ligaments, muscles, joints and every organ of the body with multiple comorbidities that doctors cannot put together yet. It can range from mild to life threatening depending on the type of EDS and the degree to which the person is affected. It flares and wanes, allowing for some days to be better or worse than others. 

In children it can show up as the child being 'floppy', weak, late to walk, getting easily injured, unexplained bruising for example. In teenagers it can show up in 'growing pains' that are actually hip instability, frequent dislocations, hypermobility and extreme flexibility, joints that dislocate or sublux. In general, an individual that is flexible, suffers frequent injuries, suffers and/or complains of fatigue, chronic pain that does not go away, migraines, dizziness, fainting, heat and cold intolerance, exercise intolerance should be evaluated for EDS or Hypermobility Syndromes.

One of the most common comorbidities of EDS is P.O.T.S otherwise known as Postural Orthostatic Tachycardia Syndrome, which means that as soon as they stand up from sitting position the person's heart rate jumps up over 30 beats per minute more than when they are sitting down, some may also have a significant drop of blood pressure, making standing up or sitting standing up in the same position without moving around a risk for fainting or at best feel quite sick. If you see someone waiting in line at the supermarket leaning over their trolley, you may suspect they have P.O.T.S. or a bad back or both.😊

P.O.T.S is part of Dysautonomia, which is an umbrella term to describe several medical conditions that cause a malfunction of the autonomic nervous system that causes multiple problems such as heat and cold intolerance, exercise intolerance, fainting, unstable blood pressure, to name but a few. Dysautonomia is not rare, over 70,000,000 people worldwide suffer with one form or another yet most patients take years to get diagnosed due to lack of awareness both amongst the public as well as within the medical profession.

But it does not end here, comorbidities include migraines, Mast Cell Activation issues causing multiple allergies and intolerances to chemicals and medications as well as foods, gastrointestinal problems, gastroparesis, dysphagia, leaky gut, nutrient absorption problems, IBS, chronic gastritis, interstitial cystitis, organ prolapse, frequent and multiple injuries, scoliosis, spina bifida, lordosis, spondylolysis, Chiari malformations which is essentially having the brainstem sink into the spinal cord, neck and cranial instability, slipping ribs, joint dislocations and subluxations, TMJ problems, proprioception problems, dizziness, light headedness, autistic traits, spontaneous and extensive bruising, osteopenia and osteoporosis, vision problems, ceratoconus, retinal detachment, aneurisms, spontaneous rupture of aortas, veins andhollow organs, skin tears, bad wound healing and the list does not end here...

The symbol for EDS is the Zebra because in medicine the term 'Zebra' is used in reference to rare disorders. There is a quote for this: "Sometimes if you hear hoofbeats, it really is a Zebra". EDS can be unexpected because it is considered rare, yet Hypermobility spectrum disorders are common but remain undiagnosed, underdiagnosed or misdiagnosed and millions of people around the world suffer in silence and desperation. 

There is no cure for EDS or Hypermobility Syndromes at the moment. Hopefully bringing more awareness will lead to better diagnosis, more research and eventually a cure! If you or someone you know can recognize yourselves in some of the above mentioned symptoms, do your research, print off the information you find and go see your doctor. The Ehlers Danlos Society, the Hypermobility Syndromes Association, Ehlers Danlos UK, are but a few of the places where you can look for information.

Lets not suffer in silence any more. Do not give up and remain alienated, allow to be bullied and accept your fate! If you do not speak up, nobody will do it for you. If your doctor does not know what is wrong with you, do your research and educate them. Do not take no for an answer. There is something called the Hippocratic Oath doctors have to take when they become doctors, it is our responsibility to ensure this oath is kept and respected. Your health, your life is your responsibility. If the medical field does not know enough yet about your condition, you have to spread awareness, not just for you but all the others like you, for today and for the future!

Visible and invisible disabilities - May is Ehlers-Danlos Syndromes awareness month

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