Polly Moyer: On balance, we’re making progress

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.

 

Conflict of interests statement: Sometimes Polly writes blogs for various organisations including Rare Diseases UK, The RE(ACT) Community and Findacure. This year she will be part of the judging panel for the Findacure student essay competition “Student Voices.” She is also the co-founder of Action for MdDS UK and campaigns for people with rare conditions, vestibular, and neuro-vestibular conditions and the doctors and organisations who support them.

 

  • Polly

    Patients with vestibular and neuro-vestibular conditions recognise that our doctors may lack the training they need to help us and we want to see this situation change. As such, some of us put together a ‘patient powered petition’ suggesting how training can be developed. Copies will be sent to organisations that set curricula and I am delighted that the information in the petition material is already helping patients and their doctors. It’s been great to read comments from professionals who support our aims such as Jose Antonio Lopez Escamez and Lucien Engelen.
    Please consider signing and sharing our petition which can be found at
    https://www.change.org/p/world-health-organization-who-vestibular-patients-for-smarter-doctors-and-better-patient-care
    Many thanks.

  • Tania Stadsbader

    Thank Polly! Yes, still a long way to go before all patients receive the services they need. But I have hope, seeing little events of progress! And many fresh insights to be shared.

    I thank all empowered patients who are helping to make this happen by raising their voices. We need more voices to join.

    I thank researchers and doctors for being open minded to any valuable patient input and for welcoming and openly supporting our actions as advocates.

    I admire professionals who are passionate to keep searching / updating / sharing knowledge / science outcomes / best practices for the sake of vestibular patients worldwide. This gives us new hope.

    Do you believe in a win/win for all stakeholders involved? Please, sign, for all people who have left comments on the petition.

  • Pat L

    Thanks to Polly and other members of Mdds UK there have been developments in diagnosis and treatment of Mdds. As a sufferer myself who was told the first time I got this awful illness that there was no cure and given no advice. I think I was lucky to get a diagnosis. I think we have come a long way in the last few years. I am looking forward to trying the new treatment in the new year. I feel there is still a long way to go before GPs understand Mdds and know how to help anyone who presents with the symptoms.

  • Polly

    Thanks, Pat. Science in the field of vestibular and neuro-vestibular conditions is moving so fast now, which is excellent. And, amongst rare conditions, those of us with MdDS are very fortunate that newly developing technologies are being used to treat us. But swift and accurate diagnosis is still of paramount importance and I long for the day when none of us feel ‘lucky’ to have got a diagnosis – although I feel this too.

  • Polly

    Thanks, Tania. I feel hopeful too, mostly because of the willingness of doctors and researchers to partner with us. This is both with respect to our personal treatment and care but also with our desire to empower them and support their research.

  • Polly

    Thank you, joniredlich. I am sorry to hear you were misdiagnosed for so long but delighted you’ve had successful treatment for MdDS at last.

  • pharmer9

    Hello – May I ask what your ‘successful treatment’ entailed?