Teen POTS and the case of the missing hand.

It's teen time here on the blog today. As all us old fogeys take our nanna naps, fellow Aussie, Rhinane, brings some of her youthful exuberance over to guest post. Okay, okay, I may be the oldest foggy here. And yes I can see 40 looming in the distance. But 15 seems very young, and 38 *cough* almost 39 *cough* correspondingly very ancient, to this old biddy, especially when my youngest is 14! Whilst I sit here sucking on my butterscotch lollies, reminiscing about "in my day..." whilst yelling at the neighbourhood kids to get off my lawn, I'll let Rhianne introduce herself.

"My name is Rhianne and I am a 15 year old with POTS, dysphagia, vasalva induced syncope and myclonic jerks. I blog over at http://keepsmilingkeeptrying.blogspot.com.au/ I try to live each day to the max because you are only a teenager once!"

Teen POTS and the case of the missing hand

One time... I lost my hand. It was the scariest minute of my entire life. Yes, it beats the lethal weapon at Movieworld.

Anyway, it was a real brainfoggy sort of day. I was doing schoolwork (I was home bound at this stage) and I was doing financial maths. I had to google there is seven days in a week. Then when I counted them and got to Friday, I freaked out. Where was my other hand?

Luckily, I eventually found my other hand. (Who ever would have guessed I was using it to count my fingers on my left hand with?) That is just one of the many situation that POTS has put me in. My constant brainfog provides me with constant entertainment.

This is me. My name is Rhianne and have been diagnosed with POTS since March of last year. I am fifteen, in year 11 and have a score of 13.8 million on temple run (just in case you're wondering). I run the blog http://keepsmilingkeeptrying.blogspot.com.au/.

Being a teen potsy isn't all doom and gloom though, I can colour coordinate my limbs with my purple converse boots.

Well I must admit, it isn't an exact match but teamed with an emerald school skirt with black full length skins, it is a great look. I should walk around with a ghetto blaster blaring LMFAOs "I'm sexy and I know it" because if anyone can rock that look, it would be me.

School also provides many more challenges (besides the whole wardrobe challenge), stairs, homework and the fact my friend love calling me Pothead. The last one is always awkward, especially when they love calling things out "like hey Pothead!" across the playground and people look around and find me the recipient is me.

After dealing with POTS symptoms for almost three years, I am learning to deal with symptoms better and better. And in the words of Elton John I'm still standing better then I ever did, looking like a true survivor, feeling like a little kid.


Rhianne

There’s a hole in the dura, dear neuro, a hole!

(source)

I love this guest post by Blooming Azaleah. As her bio says:

"When you're named after a flower, and live with Intracranial Hypertension, Dysautonomia, Gastroparesis, Pancreatic Exocrine Insufficiency and PTSD, all you can do is keep a smile on your face as you try to bloom in amongst the dirt!"

I found myself laughing despite the seriousness of, and no doubt highly difficult and distressing, situation she is faced with. She is a girl after my own heart who finds that a bucket load of sarcasm is an excellent coping strategy. Because lets face it, many of us are dealing with complex, distressing and often downright frightening health issues, and sometimes the only way to deal with all that is to laugh, big inappropriate belly laughs. She also wears the most amazing rainbow coloured socks and Wonder Woman pjs, which makes me love her just that little bit more. You can read more of Blooming Azaleah at her blog Blooming in the Dirt.

There's a hole in my dura, dear neuro, a hole!

Well, to be perfectly honest, according to all my tests and doctors, my dura (aka the protective layer around your brain and spine that houses stuff called cerebrospinal fluid or CSF for short), is perfectly intact. Can’t argue with science though, right?! Well, apparently my brain, dura and exceptional reservoir of CSF think they can.

For the past 8 weeks, I have been leaking CSF out of my nose, ears, and most recently my eyes. It really is so much fun to try and sleep with tissues crammed up your nostrils and into your ears because if you didn’t you’d need to sleep in a raincoat on waterproof sheets and pillows. Alas, sometimes the raincoat would come in handy when CSF is rushing out my eyes like Niagara Falls.

If the mental image of a twenty-something female with bright red hair, wonder woman pyjamas in bed wearing a raincoat and rain hat with tissues crammed up her nose and into her ears isn’t funny enough for you feel free to add the following. The image two nose piercings one of which is in my septum (affectionately also known as a bull ring) which when moved or knocked in the slightest(or removed in the morning) rips small pieces off the well formed, fitted and folded tissue and leaves them dangling off my metal nasal accessory like a dog who hasn’t had his behind trimmed or cleaned in a while!

I bet your thinking, isn’t that enough ridiculousness for one day?

To which I say, but wait there’s more! First I must apologise, as this offer doesn’t come with a free set of steak of knives. Sorry if you got all excited!

Given the fact that my head is currently in the phase of pressure cooker due to an overwhelming abundance of CSF, your head can’t expand with it and your doctors keep screwing your Lumbar Puncture appointments up, it starts to invade and press on your eyes.

They say eyes are the window to the soul, but right now all my eyes show is a way to solve the constant drought crisis here in Australia.

Which brings me to the next thing you should amalgamate into your evergrowing mental image!

Think of any fluid filled item, say like a hot water bottle, or one of those bendable gel filled ice packs. If you hold either one on their side, either horizontally or vertically, notice how all the liquid sinks to the lowest part and enlarges. Still with me?

Now, if you apply this too that red haired rain coated human, this means that if she lays on her side all that CSF liquid will sink towards the side she is lying on. Remember what I said about it invading your eyes? Well, because of the already high pressure behind my eyes, which with the low-lying liquid theory I mentioned above, means the eye on the side of my face I’m lying on is being put under even more pressure.

What’s so funny about this you ask? Well it means that my eyes become 2 different sizes. One of my eyeballs becomes quite withdrawn and not much larger than your average peanut, while the other transforms into a raging alien-esque basketball sized behemoth exploding from the socket. It looks absolutely ridiculous alone, but when you add that to the raincoat, tissues, piercings and pyjamas, you can understand how you can’t do anything in this situation but embrace the absurdity and bathe in it’s hilarity. Granted, I could always kidnap and torture my neurologist until he does the lumbar puncture he promised 8 weeks ago, but while torture and kidnapping is still illegal, it’s much safer to laugh!

There’s one last image I have for you today. On top of this overabundance of CSF condtion I have called Intracranial Hypertension which the pressure is raised even further when laying flat, I also have Dysautonomia which causes me to have low blood pressure at the best of times, which is lowered even more by sitting or standing up.

The crap thing about these two conditions is the treatments completely contradict each other. To lower your CSF pressure, you take a diuretic, which also lowers blood pressure even more. To treat low blood pressure you eat and drink copious amounts of salt and fluids, but it is impossible to raise your blood pressure without raising your CSF pressure.

Given the fact that my CSF pressure is already high, I’ve been avoiding salt like the plague, which has meant I’ve been stupidly dizzy and in a low blood pressure stupor for a while. When you add to normally crap low blood pressure, the maximum humanly tolerable dose of the diuretic medication, things aren’t exactly fun!

I can’t lay flat to raise my bp, because my nose, ears and eyes will spring another leak and give me the killer headache of doom, but I can’t even sit upright or stand to lower my CSF pressure, as if I do I’ll get dizzy and collapse, and knowing my luck hit my head on something on the way down leaving me with an even worse headache.

So how does an orthostatically intolerant girl with an exploding head sleep in this situation?

You know those fold out beds? The ones that have a single fold in the centre? Well imagine someone sleeping on one, and halfway through the night that centre joint gives way causing each end of the bed to fly upwards leaving the person semi squished in a V type position. That’s how I sleep right now! Thankfully I prop my head and feet up with pillows and phone books, so as to avoid that awkward nightime awakening squished in between a fold out bed!

So to summarise that mental picture for you. There is a girl with bright red hair wearing wonder woman pyjamas topped with a raincoat and matching rain hat. Her ears are stuffed with tissues, as is her nose. The look is accessorised by unmainated dog-butt like shreds of tissue on her septum piercing. She has no need for eye make up as her eyes sparkle separately with the torrents of Niagara Falls- one peanut sized and one exploding alien behemoth. If that isn’t enough, she has the luxuty of sleeping seated in a V position, reminiscent of even the most hilarious fold up bed malfunctions!

I could of very easily written my first post of new blog as a long whinge and rant about horribleness of douchebag doctors and their inability to help their patients via a very routine procedure, but I chose to share the secrets of my current sleeping arrangements- which is much more entertaining, if not slightly embarrassing, I think! But, next time you want to whinge about how you couldn’t sleep because their was a dog barking or your neighbour was too loud, just remember, you could be forced to sleep like I do!!

Cheers

Blooming Azaleah 

The Tale of a Garden-Variety POTSy Lass

(You know what I love more than this quote? The blog I found it on had,

 "god knows who the author is… google him?" Sad, but also highly amusing)

Today's guest poster is fellow Australian Bobette, the lovely Belinda. Luckily her love of Pride and Prejudice and Mr Darcy, outweighs her slight jibe at my beautiful Victoria, which we all know trumps Adelaide anyway. You may have lovely churches and Cold Chisel, but we have a festival named after the Aboriginal word for 'anus', Moomba. Top that, lady! But state rivalries aside, I'll let Belinda tell you a little bit about herself.

"Please allow me to introduce myself, I'm a man of wealth and taste" - Oops, hang on. Not quite accurate but if you're going to quote the Rolling Stones, concessions need to be made. I am neither a man, nor that wealthy, but I do like to think I have a little bit of taste (bad pun jokes aside). So obviously, female, 36, Adelaidean married to gorgeous cycling obsessed Victorian (won't hold that against him) and we share a house with a rabbit (Peter) who thinks he's a dog, 2 budgies who think they own the house and in recent weeks a cat, who has adopted us as its new family, mainly because whoever its owners were had stopped feeding it and it had become so skeletal that I couldn't in all good conscience let it starve to death. I am an ICU nurse despite the fact that I haven't been able to work for nearly a year and a half but technically, I am still employed by them and I refuse to be defined by my illness. I am hopelessly obsessed with the TV shows Friends and Spirited and I think that music has never been as good the alternative/Indie/grunge 90's era (having written that I've just thought of a whole stack of current bands and artists that I adore). I love to read (favourite book: Pride and Prejudice - who doesn't want a Mr Darcy?), I love to cook (when I can stand up long enough) and as something positive about this POTS thing and having to spend hours lazing around on the couch I have recently learnt to knit, so am completely prepared for the harshest of winters despite never having seen snow in my life.

The Tale of a Garden-Variety POTSy Lass

Well, here goes. A replacement post for the irreplaceable Rusty Hoe. I shall temporarily call myself The Wonky Spirit Level because that seems to be where my head space is at most days. Constantly trying to get that little bubble in my head to stay between the two black lines so I don't fall over or walk into walls ("Oh, it's nothing, I just walked into a door...").

My husband and I have both had dealings with pots. Him - when he went to the GP for vaccinations for an overseas holiday and promptly fainted at reception, fell backwards and smashed a terracotta pot with his head, earning himself an ambulance ride and a head CT. My one great regret about this is that it happened before I knew him and I missed the opportunity to laugh and mock. Turns out it's not as funny in retrospect. Me - recently diagnosed after being unwell for two years and eventually demanding a referral to a cardiologist because I was damn sure the symptoms were not all in my head as many doctors tried to tell me.

My workmates will tell you that POTS is an appropriate diagnosis for me. They will wax lyrical about how they've always known I was 'Potty' and I know to them that it must sound like a bit of a joke diagnosis. I imagine it to be wearing a red nose, big shoes and riding a tiny bike. And, like a clown, I have decided to laugh in its face (except on really bad days, because it's too much effort and quite frankly, sometime clowns just aren't that funny). Despite this I am now on a pathway of learning. Learning things about my body and my self that I never would have got the 'opportunity' to otherwise. Learning that I'm stronger than I thought. Learning that I can laugh despite being subjected to autonomic testing (Mum said she could hear my laugh drifting out across the day ward from the cardiac suite. Weird, because I don't remember it being all that jolly). Learning who my true friends are because they will stick with you through the bad times and let you know that they are thinking of you. And, not wanting to get too "Oprah" on everyone here, wondering if because of all this I will emerge a better person and, if I ever get to return to work, be a better nurse. After being healthy for 34 of my 36 years, I've never known life on "the other side". Apart from a few minor coughs and colds, I've never been a patient. I now have new insight into just how helpless and overwhelming it all can be and I look at patients now with new understanding and marvel at their bravery. Being a patient sucks and when one day I'm able to be the carer again, that's exactly what I'm going to do - care.

But above all I've that through all the sickness, tests, misdiagnoses and metaphorical kicks to the bollocks, that I still have hope. Hope that I will one day get better. Hope that my hope is not misplaced. Hope that I can once again be the wife that my husband deserves (ooh, hard to see, tearing up a bit here) and hope that I will one day see my POTS lying on the floor, smashed to pieces, like that other terracotta pot that has long since gone to Potty heaven.

The Wonky Spirit Level

Belinda 

No Need For Padded Walls: Staying Sane With Chronic Illness

Guest post time: After yet another unsuccessful attempt at scheduling posts here's hoping third time is the charm. For those who sent well wishes, big thanks and love to you all. My youngest made it through surgery and is now sporting a rather fetching, if fetid full leg brace. It's been a looooong week and a half and my exhaustion is at a point where I'm not really sure if I'm awake as I type. Fingers crossed this isn't a bizarrely bland dream and I am actually managing to get this posted. Or if it's a dream, a shirtless Jensen Ackles will soon be in too give me a back rub and make me margaritas as I type.


Either way I am still down for the count, so the guest posts will be rocking out for a while yet, whilst I try and nurse my body back from death warmed up, to death slightly more warmed up.


First up we have the fellow scifi geek and all round rockstar after pointing me in the direction of a Firefly themed Pintrest board, Claire Foust Martin. Claire is a "scuba diving marine biologist turned floral designer, turned chronic illness ass kicker. Mom/wife/blogger & fighter for patient rights for POTS & Dysautonomia". She can be found regularly blogging at STOP POTS Virginia, and her personal blog Bye Bye Bella Flora. 

 No need for padded walls: how to stay sane with chronic illness. 

Fourteen , count 'em - FOURTEEN - months either at home or in the hospital/doctors offices for me, with no social outings.  And I'm not the only one, or even close to the one with the longest record of time spent indoors.  I had been feeling a bit overwhelmed by the lack of outdoor time, and constant focus on my illness, my kids (with no break), and searching for ways to get better.  Life is about balance (insert "oooommmm" yoga zen breathing pause for effect here).  Even if you are not completely bed or home bound such as myself, you may be severely limited by your illness, and going a bit bonkers being indoors more than the average healthy person, not to mention being sick.

 

So how the hell do we all stay sane?  I REALLY want to avoid the padded walls of a psych ward, even though the padding wouldn't do much good - as I can't walk far enough to run into them.  Padding on the floor would be great though, in case of random face planting incidents. And as sexy as helmets can be - I'm trying to avoid those too.  But just in case, here are a few stylish options, for those of you that unintentionally share my love of hugging the floor and have a fear of the sharp hard edges found in bathrooms:

Pretty bike helmets...but kind of boring.

Bobba Fett's helmet, which I prefer - mainly for dramatic geek effect if found on the ground by anyone.

 

The MEGA NERD and hostile option - a Cylon helmet, with a pointy menacing looking top to impale obnoxious medical workers.

So here are a few tips to finding some balance, avoiding the padded walls, padded bed railings, various helmets, or being strapped down in a straight jacket for going nuts from the isolation and confinement of chronic illness:

 

1. Get online and find support.  This has been the biggest help for me - finding facebook groups, blogs, twitter friends, awareness groups with forums - and start talking and meeting others.  Just knowing you are not alone is amazing.  Many groups (including my site, STOP POTS Virginia, and the non-profit I am involved with, The National Dysautonomia Research Foundation) are starting up Skype meet ups.  Skype is free, and allows you actual face time with other people with your illness.  POTSgrrl recently did this very successfully as well.  Our Team Fight POTS Facebook page is also an easy tool to find online resources, and features many excellent bloggers and links to other pages.

2. Of course there are the standard reading, TV, and movie options - I find that I have become completely burnt out on TV, so I take days and marathon my favorite movies and shows that I have on DVD.  They are usually on in the background as comforting noise.  Hearing "Take my love, take my land, Take me where I cannot stand, I don't care, I'm still free, You can't take the sky from me."  relaxes me and if I need to lay back from whatever I'm doing, I know that Captain Tightpants is gracing my TV while I take a break. (This is a Firefly reference for you un-nerdy folk). 

3. Help others. In my current state, I feel like I am taking and taking and taking - and not doing much giving. Relying on others constantly for support is a real ego blow, and makes that whole "productive member of society" thing kind of tough.  Start a blog, volunteer online, post dirty pictures for poor lonely soles...wait...don't do that, but - you get the idea.  Finding a way to feel useful and helpful to others is proven to increase self esteem, take your mind of yourself and your illness.  It always reminds me that there are many people WAY worse off than myself.

Star Wars peg people!

4. GET CRAFTY.  My hands aren't working too well these days, and I know many other dysautonomia peeps deal with the same thing (and all the other muscle affecting, flaccid finger inducing illnesses do as well).  This has been tricky to figure out - but Pinterest has become my new best friend.  There are loads and loads of links and pictures of crafts on there - and I weeded through many to find some that will work from bed, are cheap, and I can do while my infant is sleeping, that I also can put down and easily start back up when I feel well enough.  I am embarking on painting peg people, and can't wait.  I plan to make Storm Troopers, Jayne with his famed hat, a few Superheros for my son, and maybe a fairy or two for my daughter.  Definitely Princess Leia for my daughter though - have to start her young (she's 6 months old).  And maybe a soccer player for my husband. I'm WAY to excited about these peg people, but that's the point.  You may even get crafty enough to open an Etsy.com store and sell your goods, or sell them and give part of the proceeds to your favorite charity.

5. Get dressed, put on some make up, and maybe do something wild and crazy to your appearance.  I just dyed my hair a crazy shade of maroon (it was supposed to be purple-ish, but my hair had other plans). The act of dying my hair left me bed ridden for days, but was totally worth it.  Since I am no longer working in a professional environment, this was my middle finger in the air rebellion at commonly accepted hair colors.  It may seem lame, but really was empowering. I love it. And everyday I am able, taking the time and expending the energy to put on real clothes, and maybe even some makeup - even if I'll just be laying around the house makes me feel less sick and more "normal".

I'd like this little nook somewhere in my house.

6. Last one!  Make your environment the most comforting to you as possible.  If that means you are stuck primarily in one room, try to get help, or do a little every day, to make it the best, happiest, coolest, or whatever adjective works for you - place possible.  Some people like zen, some like organized, some like lots of greenery.  Make your favorite or most used space (indoors or out) the most happy place you can, so you can literally go to your happy place.  I love color, plants, and things to be organized.  I had to explain to my husband why the chaos of having drawers left open, or things not in piles drives me nuts.  And I need to be as un-nuts as possible, and boy is he is on board with that.   We are moving back to our old town home that we own (and can paint), and our bedroom will have bold colors on the walls, because they make me happy.  The white walls of our rented apartment near my hospital have been tough, as I HATE white walls. So they are covered in pictures and colorful things for now, and we keep the room neat and organized.  It makes a huge difference for me.

 

Do you have any tips to help others stay sane while battling chronic illness?  Post them below!  Would love to hear your suggestions.

 

-Claire 

Signs

Taking part in Edenland's meme Fresh Horses Brigade today.


When Eden asked "what's your own personal sign that things will be ok? That you're safe, in the world. That something or someone has your back" I'll have to admit I was stumped. It's not something I really think about. And after reading her post I had to admit I really don't know.


In many respects I am jealous that she has such a clear and beautiful sign in her feathers. To have something which instantly engenders a feeling of peace and safety. It seems such a foreign concept. 


I have had many days/weeks/years where I think the universe is an uncaring cow. When the shit keeps coming like a Category 5, and the calm of the eye of the storm seems unattainable. When I think back and try to remember what got me through those times there is no clear and tangible sign. Instead what I find are a series of unrelated and in many ways, unremarkable moments. 


No two are the same. None are linked to epiphanies. Or fireworks. None of those annoyingly perky Oprah lightbulb moments. They are tiny, and no doubt inconsequential to others. None left me with a feeling of heavenly calm. None left me with momentous change. But little by little, they let me breathe a little easier.


Tiny moments. 


My moments. 

A flash of vibrant blue in the garden that led me to discover a tiny plant I thought had died years ago.

The smell of Daphne on a cold Winter's day.

Laughing in a hospital courtyard as a girlfriend describes a vagina art documentary.

An email about the blog, that simply said "thank you".

Standing in the backyard and having a dog come and push his warm furry head into your hand.

A flower picked by my son, "just because".

Giggling at a Dorothy shoe/zombie parody, sent by someone I've never met, but call friend.

A husband who holds my hand as we sleep.

Are they signs? 

I'm not sure. Maybe?

But they are the moments that make it all bearable. 

Media misrepresentations of Dysautonomia Part II: ABC World News

Yet again Dysautonomia, in particular POTS (Postural Orthostatic Tachycardia Syndrome) has made the news following a story on ABC World News (US), and once more patients are left dealing with the aftermath of inaccurate information.

For those who did not see the story, POTS was described as being directly related to small heart size resulting from de-conditioning, with exercise being touted as the 'cure'. Admittedly, the hosts did provide a short caveat following the story to say this may not be the case for all patients. However, the story itself was clear in its message and was given additional legitimacy by the use of repeated reference to NASA research. And again patients are left frustrated.

Despite overwhelming evidence that aetiology for POTS and other forms of Dysautonomia are many and varied, including but not limited to, autoimmune conditions, neuropathologies, connective tissue and mitochondrial disorders, POTS was presented as a uni-dimensional construct. Similarly, despite many patients extremely physically active prior to the development of POTS (including Olympic athletes and marathon runners) POTS was inaccurately portrayed as a condition created through de-conditioning and repaired or cured through reconditioning via a recumbent exercise regime. With the conclusion that resultant small heart size is the central problem. This again despite many patients continuing to demonstrate hearts with normal dimensions for age and sex, as confirmed by repeated heart ultrasounds even years after symptom development.

The by line underneath the video " NASA research helps treat women with fainting disorders" is also inaccurate as men are also affected by POTS, although the ratio of women to men (5:1) swings heavily towards women. Not to mention that not all POTS patients experience syncope. 

Whilst, there are undoubtedly POTS patients who meet all of the criteria mentioned in the story, and are essentially 'cured' by such an exercise regime, they are but one small group amongst a diverse range of patients. To present one small segment of a patient population as representative of a whole disorder is not only inaccurate, it is highly damaging to those who do not meet this limited criteria

What is troubling about both this recent event and The New York Times article of last year (see my response last year on ABC Australia's RampUp), are that the purveyors of information are seen as well respected media outlets, thus lending legitimacy to information they provide. Whilst I as a patient have a vested interest in accurate information about my diagnosis, the average reader or viewer will take as gospel the snippet of information provided by these forms of media.

A quick scan of patient forums reveals that patients are already being left 'helpful' messages from friends and family that all they need to do is exercise and they will get better. Some are even having the legitimacy of their illness and continuing ill health challenged. A disastrous outcome by anyone's reckoning.

It has also come to light that the patient involved in the story has been poorly treated and misrepresented by the network. Her sister who accompanied her during the filming left the following comment on the ABC World News website:

"...were at the Cleveland clinic for a week of additional cardiac and neurological tests when she was asked to share her story about POTS. This has been a very debilitating condition for her and many other people; and so she agreed to share her story and even repeat tests that were difficult and painful for her – for the camera – so people could learn and understand more about this very life alternating diagnosis. In fact this taping took about 6 hours to film and required her to be stuck 3 additional times for an IV. I accompanied her, often pushing her in a wheelchair, and watched all of the videoing for this story. So what happened? ABC used a few seconds of her story, took it highly out of context, and made her out to be really without disability and even pronounced her “cured” – even when they knew that she hadn’t even received her test results back to determine the cause of her POTS (and there are MANY). Further – she has submitted several responses to this blog that have not been published (even though posts before and after her submission were posted). She has friends and family now thinking her “prescription is simple” and all she has to do is exercise – oh and of course since ABC has declared her “cured” that she can now go back to her everyday life. People are even posting on this site that she doesn’t even have moderate POTS because ABC has made her disabling condition of extremely high heart rate (160) and extremely low blood pressure, extreme fatigue, blurred vision, etc out to be that she is just a “chronic fainter” who is now cured. Very disappointing and an outright total mischaracterization of the facts. I decided to try to post to see if in fact ABC will post my comments since they apparently will not even let her defend herself from these lies on a blog".

Such treatment by a patient who had the courage to share her story is frankly, appalling.

Whilst the increasing awareness of POTS and Dysautonomia in the media is a step forward, misinformation and oversimplification of a complex and poorly understood syndrome is not helpful. As patients we shouldn't be expected to simply 'be happy' with any publicity.  We have a right to demand an accurate and non-damaging portrayal of our experiences.

Whether it be The New York Times or ABC World News, medical professionals need to understand the power they wield when portrayed as experts in their field, or when linked to prestigious scientific organisations such as NASA. It behoves them to choose their words wisely. With these media outlets, and prominent and respected journalists such as Diane Sawyer, involved in the presentation of this information, legitimacy is instantly imbued. These groups need to remember that whilst legally they may not have a duty of care to ensure that the information they provide on either Dysautonomia or any medical condition is accurate and does not harm those it is intended to help, they have a moral and ethical responsibility not only to the patients represented but the wider community to not provide misleading and damaging information.

One positive to come out of this most recent issue is the unification and mobilisation of the wider Dysautonomia community. Thankfully the use of the unprofessional and demeaning term Grinch Syndrome was avoided in the ABC report thanks to the concerted efforts of the Dysautonomia community, led by Claire Froust Martin of Stop POTS Virginia and Lauren Styles of POTSgrrl.  See Irish Dysautonomia Awareness for a full round up of the issues of the last few days.

As many of the issues have not changed since I last wrote on this issue last year, here's the link to the article I had published Sticks and Stones: When the media perpetuate the myth, which covers a lot of the same topics.

To reiterate, POTS and Dysautonomia as a whole, is a complex and poorly understood disorder. Repeated and ongoing research has demonstrated that there are multiple aetiologies and mechanisms involved, all of which affect outcomes. Treatment needs to be tailored to the individual and are most often a combination of pharmaceuticals, lifestyle and dietary changes and graduated exercise programs. Some patients will essentially recover with time, some will continue to present with a relapsing-remitting profile, some with a chronic condition and some with a progressive path. It is not simply related to the heart. Thanks to the involvement of the Autonomic Nervous System, patients experience symptoms as varied as poor thermoregulatory control, delayed gastric emptying and even how their pupils react to light. The severity of the symptom presentation and the impact it has on the lives of sufferers and their families is varied. Many patients also present with a myriad of comorbid conditions which make treatment complex and difficult.

This is what the ABC World News story failed to convey and this is why patients will continue to make their voices heard.

Michelle

PS. Yes yes I am having a blogging break, really I am. My youngest goes in for surgery on Monday so I'll start putting up the guest posts next week. :)