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Ménière’s disease in women – can the cyclical nature of symptoms in some women provide insights into its mechanism of action?

August 8th, 2017

Suzanne Monaghan

The internet abounds with anecdotal stories from women of how their symptoms appear to worsen at points in their menstrual cycles, or during pregnancy. In fact, the worsening of symptoms during pregnancy is often what leads to a diagnosis for many women. Despite this, little is said on the matter on official sites, leaving women surprised and unprepared for attacks, or unaware that their severe premenstrual symptoms may actually be indicative of Meniere’s. Here I take a look at the evidence for the claims which, if true, mean doctors and patients need to take gender into account when developing treatment strategies.

A small 2013 study focusing on women with Ménière’s showed that the number of vertigo episodes in premenopausal women was almost double that of postmenopausal, and additionally that 62.5% of the postmenopausal women reported having noticed an improvement in their symptoms after the menopause. Of the still menstruating women, 70% claimed to have noticed a worsening of their symptoms during the premenstrual period [1].

Another study found a significant decrease in vertigo during the premenstrual period in women who also matched the criteria for Premenstrual Syndrome [2] – a condition characterised by bloating, emotional changes and fluid redistribution. As a low salt diet is strongly recommended for Ménière’s suffers, with the goal of reducing endolymph pressure in the inner ear, it is plausible that hormones which increase fluid retention may have the opposite effect.

But as vertigo is a known symptom of PMS, how can we be sure this is an actual increase in Ménière’s symptoms? Well, in addition to worsening vertigo, it has been shown that there are measurable difference in audiometric function [3], with hearing significantly worse during the premenstrual period in susceptible Ménière’s patients. This suggests the problem is not limited to just an increase in vertigo, but of other Ménière’s symptoms as well.

It has also been shown that treatment with leuprolide acetate, which abolishes gonadotropindependent ovarian sex steroid production, led to the cessation both of menstruation and of Ménière’s symptoms in women with cyclic Meniere’s symptoms[4], again strongly indicating a link between hormone changes in women and attacks. So what are the factors which may be driving this effect?

Increased oestrogen and progesterone

Both these hormones can cause sodium and water readsorption and lead to increased plasma volume. [5]

Thyroid hormones

Hypothyroidism has been posited as a cause of premenstrual syndrome [6] and known to be comorbid with Ménière’s in many patients [7].

Stress

Stress, increased levels of antidiuretic hormone and onset of Ménière’s attacks in both sexes were linked as early as 1952[8], with a study linking symptom severity to stressful life events, and this would explain why they could be more severe for women suffering from PMS, who are generally more emotional and stressed at that time of the month. This theory was revived and expanded in 1997[9] showing there was a link between stress, increased levels of anti-diuretic hormones and vertigo.

Antidiurectic hormone

ADH levels were found to be significantly higher in Ménière’s patients undergoing an acute attack than when they were in the remission phase. The researchers also note high stress levels in patients during attacks, although no correlation between stress scores and ADH levels in their study group. They also suggest that it may be in fact a vasopressin (an antidiuretic hormone) sensitivity and the high levels of ADH may be symptomatic, rather than causative. Another study showed a greater concentration of vasopressin-2 receptor sites in the Meniere’s group, and it may be that this greater sensitivity to vasopressin is more important than ADH levels [10].

Migraines

Migrainous vertigo does not always causes headaches and shares a lot of similarities with Ménière’s, including vertigo, hearing loss and tinnitus, and it is known to be triggered by menstruation. It may, therefore, be that the apparent increase in symptoms around this time is actually a misdiagnosed migraine.

Blood viscosity

For unknown reasons, blood viscosity peaks in women just before menstruation, before rapidly normalising [11]. This may be relevant to Ménière’s sufferers as increased blood viscosity has been shown to result in inner ear dysfunction, leading to hearing loss, tinnitus and vertigo [12].

Pregnancy

There are conflicting reports from pregnant women with Ménière’s, some say their symptoms were at their worst during pregnancy, others say they had no symptoms at all. These problems are not unique to sufferers though, with one study showing of 82 pregnant women interviewed 33% reported tinnitus, 24% pressure in the ear, 18% hearing reduction over the course of their pregnancy and over 22% reporting vertigo in the first trimester [13]. This indicates the fluctuating hormone levels cause problems even in healthy women, although not to the debilitating extent women with Ménière’s report. The most likely cause is down to the increased fluid retention in pregnancy, leading to reduced serum osmolality.

In one case study following a patient through her pregnancy, vertigo attacks increased up to 10 times per month during early pregnancy, when the serum osmolality was significantly below normal, decreasing in frequency over the course of the pregnancy as serum osmolality rose to normal levels [14]. The osmolality is a measure of the amount of dissolved sodium, potassium, urea and glucose in the blood, and it is theorised that low levels of these solvents induce an osmotic gradient between the outer and inner endolymphatic sac in the ear, causing water to enter into the endolymphatic space and trigger the symptoms of Meniere’s. They also noted an increase in symptoms after birth, which was not linked to osmolality, but may have been stress-related.

Conversely, some women with Ménière’s report an improvement of their symptoms during pregnancy. This may be down to a prostaglandin called PGI2, which is increased during pregnancy, and has been shown to cause significant long term reduction in vertigo, completely controlling it in 65.9% and improving it in 29.5% of 44 patients [15].

So, in summary, it seems advisable for women with Ménière’s to prepare for the possibility of their symptoms worsening greatly premenstrually and during early pregnancy, and for doctors to consider the possibility that any patients they see with severe vertigo brought on by menstruation or pregnancy may in fact be suffering from undiagnosed Ménière’s. It may be advisable to preempt the increased severity of symptoms by prescribing an antidiuretic to susceptible women before their period in addition to a low-salt diet.

However, not all women with Ménière’s have symptoms that fluctuate with their cycles; the fact that some do provide clues into the mechanism of this poorly understood disease and, hopefully, if it is confirmed why this happens in some women, we can use that information to provide new treatments to all sufferers, male as well as female.

References

1. Rahil Muzaffar1 , Owais Mattoo, Shafqat Islam, Imran Sheikh, Rauf Ahmad; Menstruation and its Association with Vertigo in Meniere’s Disease: A Prospective Study International Journal of Contemporary Medicine 1.2 (Jul-Dec 2013): 45-51.

2. Morse, Gwen Goetz; House, John W. Changes in Ménière’s Disease Responses as a Function of the Menstrual Cycle, Nursing Research: September/October 2001 – Volume 50 – Issue 5 – pp286-292

3. Andrews J, Ator GA, Honrubia V. The exacerbation of symptoms in Meniere’s disease during the premenstrual period. Arch Otolaryngol Head Neck Surg 1992;118:74–8.

4. Thomas M. Price, MD; Thomas C. Allen, PhD; Darrell L. Bowyer, MD; et al ; Ablation of Luteal Phase Symptoms of Meniere’s Disease With Leuprolide; Arch Otolaryngol Head Neck Surg. 1994;120(2):209-211.

5. Nina S. Stachenfeld; Sex Hormone Effects on Body Fluid Regulation; Exerc Sport Sci Rev. 2008 Jul; 36(3): 152–159.

6. Brayshaw ND, Brayshaw DD. Thyroid hypofunction in the premenstrual syndrome. N Engl J Med 1986;315:1486–7

7. Brenner M, Hofstad DL, Hain TC. Prevalence of thyroid dysfunction in patients with Meniere’s disease. Arch Otolaryngol Head Neck Surg 2004;130:226–8

8. Edmund P. Fowler Jr., M.D. and Adolf Zeckel PSYCHOSOMATIC ASPECTS OF MENIERE’S DISEASE; The Journal of the American Medical Association Vol 148 No 15, April 12 1952

9. Aoki, M., Ando, K., Kuze, B., Mizuta, K., Hayashi, T., & Ito, Y.; The association of antidiuretic hormone levels with an attack of Meniere’s disease Otolaryngology, Gifu University Graduate School of Medicine, Gifu, Japan

10. Kitahara T, Doi C, Maekawa C, et al. Meniere’s attacks occur in the inner ear with excessive vasopressin type-2 receptors. J Neuroendocrinol 2008;20: 1295–300

11. Dintenfass L, Julian DG, Miller G. Viscosity of blood in healthy young women: effect of the premenstrual cycle. Lancet 1966;1:234. 37. Andrews JC, Hoover LA, Lee RS, et al. Vertig

12. Andrews JC, Hoover LA, Lee RS, et al. Vertigo in the hyperviscosity syndrome. Otolaryngol Head Neck Surg 1988;98:144–9.

13. Paula Michele da Silva Schmidt, Franciele da Trindade Flores, Angela Garcia Rossi, Aron Ferreira da Silveira; Hearing and vestibular complaints during pregnancy; Brazilian Journal of Otorhinolaryngology Volume 76, Issue 1, January–February 2010, Pages 29–33

14. Uchide K1, Suzuki N, Takiguchi T, Terada S, Inoue M.; The possible effect of pregnancy on Ménière’s disease. ORL J Otorhinolaryngol Relat Spec. 1997 Sep-Oct;59(5):292-5.

15. Tadashi Kitahara, Noriaki Takeda, Izumi Koizuka, Hitoshi Ogino Effects of Prostaglandin I2 Derivative on Symptoms in Patients with Vestibular Ménière’s Disease; Equilibrium Research Vol. 65 (2006) No. 2 P 116-121

This article first appeared in SPIN Issue 94 (2017), the magazine of the Meniere’s Society UK and is reproduced here with their kind permission.

Everyday Hero – Walking for the Whirled

August 8th, 2017

Anne1

Diagnosed with Meniere’s in October 2015, Whirled Foundation member Anne left the specialist’s rooms with a prescription for Serc and Stemetil and told to come back in two months. She had no idea what she was dealing with. Not only was she determined to learn as much as she could about the condition, but she also wanted to help others on their journey also. She took on the role of Peer Support Group Coordinator in Sydney and has been holding member meetings since November 2015.

Like many others, Anne has run the gamut of trying to find management options that work to help control her symptoms. It’s been a long road but with perseverance she has found some relief. She now finds herself back at the gym and hiking again, something she had always enjoyed until Meniere’s became part of her life.

Feeling more like herself again, Anne has decided to embark on a personal challenge to walk part of the Great Ocean Road from Shelley Beach to the 12 Apostles and raise awareness of Meniere’s disease and Whirled Foundation.

You can help support Anne’s efforts by donating via her supporter page  and or sharing it with your friends, colleagues and other networks.

How you can become an Everyday Hero

If you would like to help raise funds for Whirled Foundation, it’s simple. You can create an Everyday Hero fundraising supporter page, just like Anne, to share with friends, family and colleagues and ask them to join in or make a donation. Click here to visit our Charity page and get started, or contact Whirled Foundation on 1300 368 818 or email info@whirledfoundation.org for more information.

Don’t forget to let us know when you have created your supporter page so we can help you spread the word!

Current Research

June 28th, 2017

Do you suffer with Migraine or headache? What about Mal de Debarquement Syndrome? You might be able to assist in current research studies.

Migraine or Headache

If you live in Sydney or Melbourne and suffer from chronic headaches or migraines, you should consider registering with Headache Australia to participate in research. There are several research projects underway looking for volunteers.

Visit the Headache Australia website for more information and a full list of current studies seeking volunteers.

Mal de Debarquement Syndrome (MdDS)

The Mal de Debarquement Syndrome Research Group at Western Sydney University are seeking participants for:

  • A Spontanous and Atypical Onset MdDS study (via an online survey).

This research aims to contribute to the understanding of the underlying mechanisms of MdDS and specifically to collate data regarding the basic clinical features of MdDS, which might be unidentified or overlooked due to the subjective nature of the condition. The aim is to collect survey data from spontaneous/other onset MdDS patients within NSW, nationally and internationally. Click here to participate.

  • A Pregnancy and MdDS study (via an online survey).

This study seeks to collate data regarding the effects of pregnancy on MdDS symptoms. The aim is to collect survey data from MdDS patients who are currently pregnant or who were pregnant whilst having MdDS. Click here to participate.

Severe dizziness treated with steroid injections into the eardrum

April 12th, 2017

Kate Wighton, Communications and Public Affairs, Imperial College London

Injections of steroid into the ear are an effective treatment for a common form of sever dizziness, suggests a new study.

In a new trial, scientists from Imperial College London compared current treatments for Meniere’s disease, which causes debilitating dizzy spells.

They found that injections of the steroid methylprednisolone, through the ear drum, are as effective as the current ‘gold standard’ treatment. The current option is an antibiotic called gentamicin, and is also injected into the ear, where it destroys inner ear cells. The treatment prevents dizziness attacks, but can leave patients with permanent hearing damage.

The new trial, published in the Lancet, found that the steroid injections are as effective as gentamicin, but without the side effects. Patients who received the steroid injections were better at hearing speech clearly, compared to those who received the gentamicin injections.

injections pic

The researchers are now recommending medics offer the steroid injections to patients before trying gentamicin.

Professor Adolfo Bronstein, lead author on the paper from the Department of Medicine at Imperial, said: “Meniere’s disease causes disabling attacks of dizziness that in some cases can leave people unable to work. However at the moment the only treatment we have for severe cases is a so-called ‘destructive treatment’ that kill cells in the inner ear. Doctors, including ourselves, always assumed steroid injections were less effective than the current treatment, but we were surprised to see they work just as well as gentamicin, but do much less harm.”

Meniere’s disease affects around 30,000 people in the UK, and causes intense attacks of dizziness that last anything from a few minutes to 24 hours. During the attacks a person is usually unable to stand, and suffers from hearing loss, as well as nausea or even vomiting. The condition usually strikes people over 40, though scientists still do not know what triggers the disease. One theory is that the condition causes a build-up of salt and fluid in the inner ear.

This section of the ear, which is closest to the brain, holds equipment crucial to maintaining balance. This equipment constantly communicates with the brain, eyes and limbs to keep us on our feet.

Scientists believe the build-up of pressure can cause tiny leaks of fluid in the inner ear, which can cause the balance equipment to malfunction. The condition can also lead to permanent hearing loss.

There is no cure, although the early stages of the disease can be treated with medication and exercises. Severe cases can be treated with injections of gentamicin. After being injected into the ear, the medicine travels to the inner ear where it destroys the cells responsible for balance, and stops the dizzy spells. Usually only one ear is affected, therefore patients still have a working balance mechanism in their healthy ear, and can re-train their balance with exercises.

However, gentamicin can also destroy hearing cells, and up to one in five patients can be left with permanent hearing loss.

Benefits for patients

In the latest study, researchers at Imperial gave 60 patients with severe Meniere’s disease either injections of gentamicin or steroids. The patients were on average having more than one dizziness attack a week. They were given two injections of one of the treatments, under local anaesthetic, two weeks apart. Neither the patient nor the researcher knew whether a patient received steroid or the gentamicin.

After a two year period, all patients’ dizziness attacks had reduced by around 90 per cent. However the patients who received the steroid injections had better speech discrimination – the ability to hear words clearly – than those who received gentamicin.

Neither treatments were found to have any other side effects, although the injections of gentamicin often triggered a severe dizziness attack when first administered.

Professor Bronstein added that those who received steroid injections were more likely to need additional jabs to stop their dizzy spells.

“For a patient who lives in a remote location where accessing repeat injections would be difficult, then gentamicin would be an option. However, if a patient is able to receive repeat injections, and is concerned about future hearing loss, the steroid injections may be a better choice.”

Natasha Harrington-Benton, Director of the Meniere’s Society, who funded the research said: “We are pleased to have been able to support this research and are encouraged by the outcome. The trial has led to a better understanding of gentamicin and steroid treatments for Meniere’s disease; giving hope to those affected by this complex condition.”

The research was funded by the Meniere’s Society

“Intratympanic methylprednisolone versus gentamicin in patients with unilateral Ménière’s disease: a randomised, double-blind, comparative effectiveness trial” by M.Patel at al is published in The Lancet.  http://thelancet.com/journals/lancet/article/PIIS0140-6736(16)31461-1/fulltext

This article was first published on 16 November 2016 on the Imperial College website and is reproduced with permission. View the original article here http://www3.imperial.ac.uk/newsandeventspggrp/imperialcollege/newssummary/news_16-11-2016-17-45-52

 

Editor’s Note:

Another steroid, Dexamethasone, has also been shown to be very effective in clinical trials in treating Meniere’s disease.

More than feeling ‘a bit rocky’. Mal de Debarquement Syndrome (MdDS) Australia quality of life survey

April 12th, 2017

This report is the first study to investigate quality of life for those suffering with Mal de Debarquement Syndrome (MdDS). In June 2016, members of MdDS Australia were invited to participate in an anonymous online survey investigating their quality of life in regards to general health status; work and social activities; depression and fatigue; life enjoyment; and MdDS inference in daily activities.

Sixty-three members (73% response rate) completed the survey over the four-week period. Average age of the respondents was 41 years, with 96% of the respondents being female. Time of onset to official MdDS diagnosis was 2 years. The general health of respondents was fair to good but there was noticeable response regarding the future of their health status in the future. MdDS has a notable effect on activities of daily living, and also the work environment (including housework), where many respondents noted that they have modified their working hours/load to accommodate MdDS. There was almost unanimous agreement that there is significant ignorance or misunderstanding of MdDS by clinicians and allied health workers. Also, the lack of understanding of MdDS in the wider community may also play an effect on the working environment for respondents.

Overall, this preliminary survey has found that the multiple variables of ignorance/misunderstanding, modification of the working environment (including housework), and being unsure of the future, collectively contribute to constant anxiety and worry about MdDS which is likely to have an affect on cognitive abilities and the mental health of a majority of respondents. Future research should look at creating an individual quality of life score to understand how MdDS affects each person specifically.

Click here to read the full report.

Emeritus Professor William Gibson AO – Biography Launch

March 6th, 2017

Bill Gibson_approved cover copy

Most people in hearing impaired circles in Australia would have heard of the renowned ear, nose and throat (ENT) surgeon, Emeritus Professor Bill Gibson AO. He is a world expert in both Meniere’s disease and cochlear implantation. There are more than forty patient stories in his biography. While most are about cochlear implant recipients, of different ages and backgrounds, two of the stories are about sufferers of Meniere’s disease.

Between 1984 and 2014, Bill Gibson performed the bionic ear operation more than 2000 times, making him one of the most prolific surgeons in his field. During that time he was a patron, friend and/or expert for many hearing associations including the Whirled Foundation, for which he is a life member and has contributed articles for the newsletter Equilibrium.

The foreword to the biography, supplied by Professor The Honourable Dame Marie Bashir AD CVO, concludes with the following quote: ‘Professor Bill Gibson is an outstanding man, a great humanitarian and deserving of this well-researched biography about his exceptional contribution to medicine’.

Bill Gibson: pioneering bionic ear surgeon, by Tina K Allen (NewSouth Press, 1 March 2017) includes an eight-page photo section with thirty-two illustrations. A book order form can be downloaded from the CICADA website by clicking here  ($25 + P&H) and copies of the paperback and e-book are also available to purchase from on-line booksellers or from your local bookshop (RRP $35).

More Awareness Needed

March 6th, 2017

“I suffer from vertigo and it’s bloody awful. Last year I suffered from sudden hearing loss just overnight. It threw my balance out for 6 months. I couldnt stand for long, everything was spinning. It has improved now but I still get bouts of vertigo, its very scary. Doctor and specialist dont know why this happened. I took stemetil tablets for 6 months for the severe vertigo. Then gradually I was able to stand and walk by myself without any medication. It has left me being scared to the point where someone in my family goes shopping with me. It changes your life big time. More awareness is needed.”

Have you ever tried to explain your vertigo symptoms to someone and had the response “Oh yeah, I get dizzy too sometimes” ?

You’re not alone! If there is anything our members wish for more, other than a cure, it’s more understanding from family, friends and colleagues.

“I experienced vertigo for 48 hours. I’m not sure what caused it but it was the worst feeling, it made me terribly sick, I wouldn’t wish it on anyone. I was lucky because it stopped after 48 hours and I haven’t experienced it since. But unfortunately some people suffer all day everyday. You really don’t know what it is like until you experience it yourself.”

One of the aims of Whirled Foundation is to raise community awareness of vestibular disorders and the impact they have on those living with the symptoms day to day. You too can help us spread the word.

Click here to download our poster, print and pin up at your place of work, local GP waiting rooms, local library or community centre.

Purchase our awareness wristbands. Click here to place an order.

For more ideas on how you can help us raise awareness click here.

Mal de Debarquement Syndrome (MdDS) Research

March 6th, 2017

Mal de Debarquement Syndrome (MdDS) is a rare neurological condition that affects the vestibular system, which controls balance. The condition is experienced more by women and has no cure.

Symptoms of MdDS include a continuous swaying, rocking, or motion-like feeling that typically arises following a motion experience such as traveling on sea. It can also have a spontaneous onset, where patients cannot attribute the onset of their symptoms to a motion-event. It is estimated to affect 12,000 people in Australia, and 3 million worldwide. As the discovery and research of MdDS is still novel, the underlying cause and aetiology of symptoms is currently unknown, and thus treatments for this condition have yet to be completely effective.

Dr Cherylea Browne from the MdDS Research Group at Western Sydney University became interested in MdDS after her own diagnosis of the condition and is now conducting research into the clinical features of MdDS. Her interests include the underlying hormonal aspects of MdDS and autonomic nervous system maladaptation in MdDS patients. The MdDS Research Group, though early in its formation, has generated interest from around the world, with collaborators contributing to research studies from Mt Sinai Hospital in New York, Prince of Wales Hospital in Sydney and Antwerp University Hospital in Belgium.

Currently, the research group has a questionnaire available for people with MdDS whose initial onset was due to a motion event. Click on the following link to participate in the research. This questionnaire will be open until the 15th of March 2017:

https://www.surveymonkey.com/r/MdDS_Survey_Browne

Other questionnaires and other research projects that require participants to visit the laboratory in Sydney will be advertised on the MdDS Research Group Facebook page:  https://www.facebook.com/MdDSResearchGroup/

Please contact Dr Cherylea Browne c.browne@westernsydney.edu.au  for any information regarding research projects, collaborations or research student opportunities.

Meniere’s Disease and Hearing Disorders

March 6th, 2017

Hearing impairment is underestimated and costly, but a new inquiry is set to amplify attention on the problem.

At 15, schoolgirl Elizabeth Bova, worn down by violent dizzy attacks and ringing ears, asked her neurologist to destroy a critical part of her inner ear in the hope of regaining some semblance of peace.

Since her first year in high school, the Sydney teen had been struggling with Ménière’s disease, an incurable condition that disturbs the hearing and balance regulators.

“I was at a terrible low after a run of random dizzy and vomiting attacks, and the ringing in my ears was driving me insane because you can never switch it off,” says the now 27-year-old allied health worker.

“I was so fed up I asked my doctor for the injection that kills off your vestibular, but of course he refused because he knew it would have left me completely deaf in one ear.”

Bova, who contracted the disease at 12, is now among the estimated one in six Australians who suffers from a hearing/balance disorder, a statistic that has prompted the federal government to open a national inquiry into hearing health and wellbeing.

The standing committee on health, aged care and sport began sittings in November last year with further hearings scheduled to run until about June in centres across the country.

Continue reading the full article:
https://www.thesaturdaypaper.com.au/…/menier…/14885460004282

Inquiry into the Hearing Health and Wellbeing of Australia

January 31st, 2017

Following a referral on 2 November 2016 from the then Minister for Health, Aged Care and Sport, The Hon Sussan Ley MP, the Parliament of Australia announced an inquiry into the Hearing Health and Wellbeing of Australia. Interested persons and organisations were invited to make submissions addressing the following terms of reference:

Taking into consideration the significant percentage of Australians experiencing hearing loss and the related social and economic impact of hearing impairment to the long term health and wellbeing of Australia, the Standing Committee on Health, Aged Care and Sport will inquire into and report on:

  1. The current causes and costs of hearing loss, and ear or balance disorder to the Australian health care system should existing arrangements remain in place;
  2. Community awareness, information, education and promotion about hearing loss and health care;
  3. Access to, and cost of services, which include hearing assessments, treatment and support, Auslan language services, and new hearing aid technology;
  4. Current access, support and cost of hearing health care for vulnerable populations, including: culturally and linguistically diverse people, the elderly, Aboriginal and Torres Strait Islanders and people living in rural and regional areas;
  5. Current demand and future need for hearing checks and screening, especially for children (12 years and younger) and older Australians at key life stages
  6. Access, availability and cost of required drugs, treatments and support for chronic ear and balance disorders sufferers;
  7. Best practice and proposed innovative models of hearing health care to improve access, quality and affordability;
  8. Developments in research into hearing loss, including: prevention, causes, treatment regimes, and potential new technologies;
  9. Whether hearing health and wellbeing should be considered as the next National Health Priority for Australia; and
  10. Any other relevant matter.

Whirled Foundation made a submission on behalf of all Australians living with balance disorders. Click here to read the submission.

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