The complexities of raising awareness for a complex chronic disorder: Dysautonomia.

Dysautonomia Awareness Month is coming up in October. A whole month. I know, I'm excited too. We need awareness. Lots and lots of awareness. We need to be educating doctors and the wider community. We need to be educating ourselves as patients to be able to access the best care for our particular case. Myths surround Dysautonomia. The only statistics come out of the US and even they are estimates, as it is such a misdiagnosed and under-diagnosed collection of disorders. Slowly more data on prognosis and numbers of particular subtypes, is coming to light, but for the most part, the numbers involved in research are small. Research is slowly gaining momentum, but it and awareness are desperately needed. So a whole month of focused international awareness is very welcomed.

But everytime this comes around I am torn.

There is a desire not only to provide general education, but also positive stories of recovery, or doing great things whilst ill. They provide a much needed boost of hope to patients and let the wider public know we are more than our illness. Often it is this side of the Dysautonomia story that dominates awareness. Everyone likes an inspirational story and they are much more palatable than the alternative. But I wonder if sometimes this desire to promote the positive, undermines the seriousness of the disorder? In turn undermining the experience of many patients. Also leading to the "it won't kill you", "just get on with life," type of comments from medical professionals who perceive these disorders as more an inconvenience rather than a serious and complex condition.

There are a subset of patients who are severely unwell and will continue to be severely unwell. There are many who won't get better. Who will continue in a chronic state or progress. There are patients who are in and out of hospital on a regular basis. Who should be given a frequent flyer card for their repeated ED presentations. There are patients who no matter what combination of meds, exercise, dietary and lifestyle changes, meditation etc will not get better, or at least for not a long period of time. There are forms like Multiple System Atrophy which are fatal. In every subtype, symptoms range from mild to severe, with disability varying accordingly. The point being that these are complex chronic conditions, and life changing for many. This is not to take away hope from patients, as there are many who get better or are well managed, but there needs to be a commensurate recognition that this is not all patients and hiding from that fact does a disservice to those patients struggling.

Time to diagnosis from symptom onset is thought to be around 6yrs, yet there are many patients who have been ill 10 and 20 or more years before finally receiving an appropriate diagnosis and treatment. Even 6 years is an appalling statistic. That represents six years of uncertainty, fear, declining health and either no, or inappropriate treatment. People lose jobs, drop out of school and university, marriages breakdown and the functional impact of life can be huge.

The misdiagnosis of a variety of mental health conditions is rife. Anxiety, Depression, Somatoform disorder, Conversion disorder are all reported prior to accurate diagnosis of a form of Dysautonomia. Trust is lost in the medical system. And patients experience stigma and shame which further impedes on their medical treatment. This feeds into the idea that Dysautonomia is related to mood and attitude rather than a dysfunctional autonomic nervous system. Once those labels are in your medical record they are incredibly difficult to remove.

Alternately, there is a strong correlation between chronic illness and mental health issues relating to the stress of living with illness. Dysautonomia impacts upon our sense of self, it changes our relationships, and impacts on our overall coping. Creating dedicated support networks for patients to discuss the stresses of living with illness. Linking in with community psychology and counselling services to be able to direct patients to professional services that understand chronic illness is vital if we are to give patients access to more holistic care.

Access to appropriate health care and medications is continually problematic. Finding a doctor to put the pieces together is difficult. Finding more than a handful of specialists in some countries near impossible. Western countries such as the Australia, the US, Canada, the UK and New Zealand are lucky in comparison to other countries. I receive messages from people based throughout Europe and South America who are having trouble finding even a single doctor who has heard of Dysautonomia, are unable to locate a tilt table or autonomic testing, and are winging pharmaceutical treatments. The patients in these countries are relying on other's in more well served communities, to help point them in the right direction as there is no local help available. This for me is a huge area of concern and I would love to see a more widespread International campaign for awareness and development of services.

Rural access to care is also an issue patients face. Most specialists are based in cities in major hospitals. Local health care is limited and most are unlikely to encounter either a GP or ED that has experience with Dysautonomia. This is an area prime for awareness. It also raises the issue of costs of travel to cities for patients who are often already doing it tough financially. Add in the simple logistics of such travel as many patients find prolonged travel and being upright in a car difficult and this is an area in need of both awareness and services, or at the least remote support from city-based specialists.

Many medications continue to be difficult to access in various countries. From Droxidopa and Midodrine to Octreotide, Ondansetron and Ivabradine problems, exist with access. In some cases cost is prohibitive. For example Ondansetron, used for nausea and vomiting, is only reduced in price for cancer patients going through chemotherapy (even patients who are receiving chemotherapy for other disorders cannot access the discount form), otherwise it is roughly $3 for a 4mg wafer in Australia. Yet 100 8mg tablets can be brought for $5 in New Zealand. Others like Octreotide used in the treatment of orthostatic intolerance and intractable diarrhea, are only available on the PBS here in Australia for 3 disorders, none of which include any form of Dysautonomia, off-label cost is roughly $4,000 a month. Access to IVIG for autoimmune forms is incredibly difficult (1000 blood donors are required for a single dose) and again incredibly expensive if you don't meet a limited criteria. The complexities of the health insurance industry in the US means that patients applications for needed medications is sometimes rejected. Prescribing rules in many countries are complex and some medications can only be prescribed by a small subset of specialists. Multiple medications quickly add up and financial burden is great. The cost of chronic illness overall is crushing for many and bankruptcy is common place.

Access to disability support in many countries is difficult. There are a tightening of rules here in Australia and in the US there are multiple stories of repeated rejections before finally getting on the paulty disability pensions. The UK treatment of disabled patients is legendary for its lack of care which is leading to increased suicide rates.

Paediatric patients face challenges in maintaining a school and social life. Schools are frequently reluctant to accommodate student needs. Many are forced to home or distance school, which can make maintaining a social life very difficult. Similarly, workplaces are often reluctant to accommodate workers who require modified jobs or job sites. Patients can find themselves quickly unemployed, often not by choice.

Many patients don't fit into the most common forms of Dysautonomia. POTS and to a lesser extent NCS, are the most recognised forms and receive the greatest amount of attention in awareness campaigns. Yet there are a variety of forms such as AAG, or those who have a more general Dysautonomia who receive little recognition or awareness, furthering isolation.

These are but a few of the serious issues associated with Dysautonomia. But they are issues that need far more attention. And I would love to see a focus on these important issues during our awareness month.

In only focusing on the positive stories we risk diluting the seriousness of the condition and in turn doing patients a disservice. Are we raising awareness in the wider community for better understanding of the seriousness of the disorder, or are we providing a hope boost for existing patients? Probably a little of both, but it is a question we need to ask. As patients, we are often the most informed sector of society when it comes to Dysautonomia, it is the rest of the community that is sorely in need of education.

Positive stories have their place in awareness but it is a fine line we walk. As patients we need hope. We need to believe in recovery, in life after illness. Alternatively, we need to believe in the ability to have a good life while illness is part of our day-to-day experience. I love reading stories of success. Of patients being able to return to study or work, starting families and getting married. But I also receive many emails from patients who feel the focus on this one aspect of stories don't represent their experience. That their families and doctors believe that if others can overcome, then so should they. In a sense the over-abundance of positive stories belie their experience and lead to a greater emotional and illness burden.

What the answer to this is I really don't know. It's a delicate balance of needing the wider community and in particular the medical community to understand the seriousness of these disorders, and maintaining our own hope.

Can we do both? I think we can.

But I would love to see a focus on the big issues of access to appropriate diagnosis, medication, health care, disability support, a more international focus, more subtypes, and an acknowledgement of how serious this group of disorders can be. These are the continuing daily issues with which patients must contend. They are the issues that have a direct effect on positive outcomes.

What are the big awareness raising issues for you?

And don't forget to check out the fantastic discussion going on over on FB. 

Michelle

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,600, keep donating and hopefully we can reach $10,000.