Thursday, 18 September 2014

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


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.


  1. I do have a problem with the positive stories that are featured in newspapers in the UK, firstly because I get a flooded timeline on social media with well meaning friends telling me about the latest cure. These stories also just show the "lighter" side of the sliding scale of how each persons Dysautonomia affects them.

    My Dysautonomia is progressing and no one can tell me where it will end up. I know many people who are much more badly affected than I am and consider myself in the middle zone. I am always happy to hear that people have recovered or have found medications that have helped them but when you have exhausted all avenues as I have I am left with a sense of failure. That somehow my own body's lack of response to the same medication is somehow my fault.

    It is a difficult line to tread on one hand those with only mild symptoms don't want to be scared witless but those of us with more severe problems don't want to feel ignored. The best way forward is to include as many people as possible when publicising Dysautonomia as for each it is an individual journey.

    As always Michelle a wonderful post thank you.

    1. There has to be a middle ground somewhere as it seems the more unwell are either not represented or under-represented. I agree you don't want to scare people, but there will be a percentage of new patients who go down the chronic or progressive road and are very much in need of support.

      I think for me there are so many important issues we face that all impact at a practical level that really need to be addressed. And a positive front can obscure those serious issues. The ones I raised are only a few of the issues that need greater awareness there are a heap more.

      It's not that we can't be positive but it has to be a balance. And when we are begging for acknowledgement we can't afford to water it down. Maybe it's also that the vast majority of people who follow the blog are my FB page have more complex issues either symptomwise or accesswise so I hear their experiences more.

    2. This is a great article and puts a different kind of spin on the dysautonomia awareness Month.

  2. I do think a lot of the problems stem from some of the Doctors that treat us. They can and do minimalise some of the symptoms. My own gp and consultant cant seem to get their heads around the constant level of fatigue I suffer. Even though if you look up Dysautonomia and EDS without adding the spinal arthritis all the websites mention fatigue. I do feel somewhat ignored when I bring that up.

    I just wish their was a bit more honesty and the condition was better understood by doctors or who seem to think this is some fancy version of M.E or chronic fatigue syndrome. If they better understood it and it wasn't seen as such a specialist area perhaps we would be given much more honest information.

    I suppose another problem is that we don't know who will get better, who will have it mildly and who will be chronic and progressive. However patient information should cover all aspects of it so people dont becaome afraid when new symptoms crop up.

    Its a difficult balance to achieve but the key is honesty.

  3. Sorry about the spelling mistakes in last comment. Brain is moving faster than my fingers!

  4. I do like the success stories, but I'm one of "those" people who has been dealing with this since I was at least 14 years old. I'm now 46 and I still can't get people to understand that I am in fact getting worse. The friend who drove me to another State to see the local specialist for dysautonomia was surprised to see a poster in the exam room stating that next month is Dysautonomia Awareness month. And she also commented that a lot of the symptoms Dr. Karabin was listing off are things that she had experienced. I know my friend wasn't trying to down play what I'm going through, but there is a persistent attitude from the world at large that we're making this stuff up. I wanted to tell her that it's not a contest to see who has the most symptoms, but rather a range of symptoms that those of us with autonomic dysfunction deal with on a greater scale. Yes, some of my sisters passed out when they were pregnant, usually due to anemia, but they don't pass out any more. Yes, I was able to work full time and attend college full time as a 41 year old til I graduated just before I turned 43, but for every day I pushed myself up to or beyond my limits, I paid for it for days. When I told another friend of mine last night what my BP/HR numbers were, she remarked that I "couldn't make that sh*t up" to which I responded, "Of course I can! I'm just doing it for attention" because that's what I am still accused of doing. I was told by my siblings that I have an unreasonable expectation for them to help me crisis to crisis. Well, duh! When I feel good, I can work a full time job and go to college full time. And when I feel awful, it's a crisis and that's when I need help, when I'm in crisis. My siblings have also told me that I'm not getting better because I'm either not following doctor's orders and/or not handling stress appropriately because I'd be getting better otherwise.

    And for all of that negativity going on, I am a freaking super hero. I am allowed to grieve every time something new and unpleasant relating to my condition crops us because that is a piece of me, a part of my life that is dying or dead. I don't wallow, but I do whine sometimes. And I do it all by myself because I don't have anybody else. Nobody else goes through what I go through. And frankly, it pisses me off that my mother got far more sympathy for her COPD/emphysema than I will ever get with my dysautonomia because my mother smoked like a chimney for years and I DIDN'T DO ANYTHING TO MAKE THIS HAPPEN. Yes, the diabetes is complicating it, but for 31 solid years I have been fainting or presyncopal and the neuropathy issues started long before I was diagnosed with diabetes.

    I would like to see more education of not just the medical community, but the community at large. It was eye-opening for my friend to witness first hand the chronic tachycardia I deal with. Yesterday, my first reading sitting down was 127/100 hr 114. 2 minutes later standing up was 114/87 hr 120. An hour later sitting up was 110/90 hr 110 and laying down was the winner at 133/112 hr 132. The doctor said, "You're all over the place today and tachycardic the whole time." So, like my other friend said, you can't make this sh*t up and clearly I wasn't making it up because the friend who drove me down to the appointment knew I hadn't been doing wind sprints or walking briskly (with my cane), or anything else aerobic to merit these readings.

  5. No I actually think telling both spectrums is best. I wasn't told a lot about my dysaurinomia except it is a dysfunction automic nervous system. My main body controls have no control. I learned a lot from finding and reading your blog. Without your knowledge I wouldn't know what to expect. Plus the iv therapy works. You can tell if I skip a week. No balance dizziness lethargic.. Etc..You have to point out both with this illness. People need to see the realistic aspect of what we have to deal with. Sadly whoever has it should be scared in some ways. Because our days are battles to survive our bodies not having the ability to function right on any given day.

    It isn't to scare people it is knowledge of what to expect.

  6. I appreciate your bringing this to light. Yes, the hope aspect is important, as we definitely don't want fellow sufferers to think that they've been handed a life sentence of despair, but I think that there is a magic ratio to be reached. I don't have dysautonomia that I'm aware of at this time (though I'm still in that hazy "we're still trying to figure out what the heck is going on with your body" phase of things), but I do have a working diagnosis of fibromyalgia and slowly but surely other things as well. What has raised awareness the most in my social circles is the honesty on my part of what life is like with my symptoms. When all people see regarding fibromyalgia is a Lyrica commercial that plays sappy, uplifting music over muted, slow motion daily activities in sunshine soaked settings then they believe that it's a simple matter to overcoming an inconvenient obstacle, that's all. They don't know that those medications don't work for a majority of patients, and that when they DO work it's a fairly low increase in functioning. It's NOT a panacea, unlike the way it is presented.

    Knowing and realizing the horror of the situation is what makes people realize that this is a genuine problem. Celebrating the victories brings the hope that it's not a curse to live in misery forever, and there ARE people out there who survive, who go into remission, who maintain happy, productive, low symptom lives and it HAPPENS. It does happen. But when that is not happening, what does it look like? Why should we bother to fund research if the happy pill commercials display a reality in which you just have to take a pill to feel better? No, we NEED the raw, ugly reality of the crippling symptoms, and the grief and loss of formerly functioning lives and bodies, and the fear and frustration and utter confusion of trying to find the proper medication and treatments that might help obtain some of that happy-pill-reality. There must be a call to action, an awakening to the reality of the situation, before the hope is presented. What good are the stories of overcoming if it is unknown just how triumphant that victory is?

    When presenting on the topic of abuse, which I used to advocate for survivors of before my body broke down, we first shock people with the statistics and the horror stories. Let them realize how awful it is, let them see the contrast to their comfort and happiness and health, show them the scope of the problem. THEN the hope can be brought in to maximum effect. *Despite* the harshness of the reality, this miracle took place. That's what motivates people on a personal level, when they can put the face of their daughter or lover or best friend in the place of the sufferer and feel how much they would fight for that person's rights and a future for them.

    If we're going to make a meaningful impact on the world and really show them how badly awareness and research and progress is needed, then the ugly and painful reality *must* be unmasked first. It's the only way ti dispel complacency and claims of exaggeration and attention seeking.


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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