Balance Awareness Week (BAW) 2016 recently took place. Given that I have to co-exist with a rare condition that affects my balance I can’t say that I was an impartial observer to some of the relevant news that I read during this time. Some of it made me very happy, some of it depressed me, and much of it indicated that there is still a long way to go before all patients with balance problems receive the services they need.
In an alarming parallel with the world of rare conditions, patients with balance problems can experience long delays before they get a diagnosis and appropriate treatment. Misdiagnosis and mistreatment is another common problem. Therefore much of my newsfeed featured details of patients reporting long delays in getting accurate diagnoses, having to go private to get them, travelling long distances to specialist centres for diagnoses and treatments and—due to the prevalence of misdiagnoses—being prescribed medications which damaged their systems and reduced their chances of recovery or remission. As usual, there were reports—mostly from women—of inappropriate psychiatric labelling including “illness anxiety,” “hypochondria,” and “functional overlay.”
Yet in the same week John (not his real name), a man in his fifties who had self-diagnosed with Mal de Debarquement Syndrome (MdDS), had his diagnosis provisionally confirmed and was referred to the relevant specialism for the necessary “ruling out” tests. This all happened remarkably quickly, given that MdDS is both rare and a balance disorder. Determined not to have a negative experience, John used the information I sent him to prepare for his neurology consultation. This included using the “So Stoned” mnemonic to report on the onset and pattern of the symptoms, providing sufficient information for an initial official diagnosis. The neurologist said that this had made her job “a lot easier.”
Whilst the connotations are unfortunate—and the language in it archaic—(“photophobia?”), the “So Stoned” list proved to be an excellent stepping stone to shared understanding between a patient and his consultant. John now feels confident that accessing the services he needs will “no longer feel like a battle.” This is fortunate because, as he says, “when my body has to fight just to stay upright, I have no energy left for fighting doctors.”
Slowly but surely this is a community coming together for change. Please join us.
Polly Moyer was born in Yorkshire and is the daughter of a GP and a farmer. During an enjoyable career, mainly in youth work, she developed MdDS and became an “uninsurable fall risk” so now does voluntary work.