#familial dysautonomia

[space-1z-cool]

Happy Dysautonomia Awareness month. To all people with dysautonomia, i hope your dysautonomia makes you less aware of itself this month.

to all chronically ill and disabled people ever, (gives you so many spoons), here. for these trying times.

also i hope ur able to get a treatment plan that works and doctors that listen. o7

[aelianated-star]

Buckle up folks because this is a long post -

Tips for newly diagnosed dysautonomia patients:

- Drink a lot of water (so much water guys. Especially if you have hypovolemic types of dysautonomia, like hypovolemic POTS, it’s crucial)

- Keep up with electrolytes/ salt intake. Vitassium makes salt pills, chews, and tablets. I personally prefer the tablets because I can just suck on them for a while, but I know a few people who prefer the pills.

- Compression socks help, A LOT! One major component of dysautonomia, in general, is blood pooling (which can greatly increase your risk of fainting). The compression/construction helps blood flow and return back to your heart and brain

- Your disability(s) are valid, even if you don’t pass out/pass out a lot!! Only about 1/3 of people with POTS (one of the most common types of dysautonomia) pass out! And of those, few pass out regularly/daily (such as myself). No matter what, you are valid! Even if you’re undiagnosed, even if your case is “mild”, even if you manage it well without much help; you’re valid!

- Especially for those of you who are just being introduced to disability (likely because of long COVID), it’s okay to grieve the life you used to have/planned to have. You can live a wonderful, full life with these conditions (and other conditions), it just may require more accommodations than you anticipated!

- DONT BE AFRAID TO ACCOMODATE YOURSELF! Seriously, use mobility aids, get a 504/IEP, and make your space(s) accessible to yourself! I use forearm crutches for short distances, but because of how severe my dysautonomia is, I’m reliant on a wheelchair (with someone pushing me/motorized aid) to go more than a couple hundred feet/longer (or anything that requires standing for more than 5-10 minutes).

- Get a pulse oximeter or watch! Certain types of dysautonomia may cause lowered oxygen (hypoxia) because of a lack of available blood. It’s extremely important to monitor this and make sure you’re aware of your oxygen levels!

- Find community! I personally love using “stuff that works”. It not only lets you crowdsource for information about medications or treatments, but lets you message other people with the same condition(s) as you.

- If you feel like something is wrong, please talk to your doctor. I know it’s scary, especially if you have medical trauma/PTSD on top of these conditions, but it can literally be lifesaving. I noticed a sudden uptick in chest pain and casually mentioned it to my doctor. Sure enough, we found I have two types of arrhythmias (p-wave inversion and flutters) Now I’m pushing for genetic testing to see if my diagnosed EDS is vEDS/cvEDS

- Don’t be afraid to start and try medications! I’ve tried numerous medications and haven’t found anything that works quite right yet, but that doesn’t mean I won’t :). And some of you may not need medication! You may be able to manage with lifestyle changes, or IV therapy, which is great! Do what works FOR YOU. Everyone is different!

- Rest days are productive! Your body is working really hard to keep you alive, it’s okay to take a break! Take care of yourself, really, it’s okay to conserve spoons.

[jiaade]

October is Dysautonomia awareness month.

Dysautonomia is an umbrella term (for multiple medical conditions) that can cause malfunctioning in someone’s autonomic nervous system.

The autonomic nervous system is responsible for a multitude of bodily functions, such as the regulation of blood pressure, heart rate, digestion, temperature control, etc.

I want to make one thing very clear: dysautonomia is not rare. It is very common and massively under-diagnosed. There is no cure for dysautonomia and managing symptoms is the focus of treatment.

Dysautonomia Resources

*My favorite book about dysautonomia:

•The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients by Freeman, Kelly, et al.

*Websites:

•The Dysautonomia Project: https://thedysautonomiaproject.org/

•Dysautonomia International: http://www.dysautonomiainternational.org/index.php

[chronicsymptomsyndrome]

As a kid my family used to make fun of me for stuff that is apparently exclusively reserved for “old people” like rolling across the room in a rolly chair to grab something (instead of getting up and taking three steps) or sitting down at a table to do quick food prep like cut fruit or scramble an egg (instead of just standing at the counter for 90 seconds) TURNS OUT what they called laziness was just disability all along haha TURNS OUT I just needed a mobility aid yet here I am today still without one because they gaslit me into believing I was “just lazy” and it took me decades to finally understand that’s not true. haha who knew

[tj-crochets]

Very few craft updates this weekend, because I spent the weekend mostly playing stardew valley and cooking. I hadn't been able to cook for a while so it's been nice!

[disability-and-cats]

people with dysautinomia:

[mysticaledelusion]

life update

so how are y’all’s 2025 going.

[neurotichousewife]

OK. So. It turns out I've got a chest infection. My pots is not infact getting worse. My body just can't cope with a chest infection (that I didn't notice and was therefore plowing on as normal) and pots and then apparently just forces me to rest.

Although I did enjoy explaining to my parents that I'd had a chest infection for weeks and not noticed because the pots can sometimes be just that bad.

[rubenthecatisstupid]

Crazy what changing doctors can do.

I have had to fight with doctors for years about a diagnosis, but as soon as I had an appointment with a normal doctor instead of the children's ones i had to talk to before I turned 18, they just gave me an unofficial pots diagnosis and threw pills at my face.

Just like that.

And best of all he debunked everything my previous doctors have told me in the past that I very much knew was wrong but couldn't argue about.

Vindication!!!

[dissociacrip]

i had a post-prandial episode last night (i think my reactions to eating high concentrations of carbs have gotten worse annoyingly enough, i felt really really nasty while lying down the whole time and couldn't think properly - worse than brain fog) and was mentally confused enough to take adderall instead of my propranolol at 9pm so that's how my night is going 👍🏻

[chronicsister]

My life before my diagnosis, was a mix ball of emotions. Trying to enjoy my life through the ups and downs, feeling constantly tired. However, I was in and out doctor’s appointments, imaging, trying to find a a healthy median for food intake. I had the perfect support system, my family. This entire time I was masking how I truly felt, because I didn’t want to concern anyone, be unlovable, boring, so I would push myself until I was in the ER. Almost lost my job because of it.

Here we are, a diagnosis, a partial diagnosis. Dysautonomia! Now the journey of learning how to pace myself, use the word no, and mobility aids when o can barely function.

(Follow me, if you are looking for a support system, food tips, awareness, or even just to be kind)

[helenwhiteart-blog]

Can silence and loneliness cause pain and other interesting observations

I always thought I preferred, no longed for, silence…but then, that was during all the years when it wasn’t even an option on the plate. Where I lived was so noisy, often even in the night, that there was simply no choice but to put up with noise, It was never completely quiet, well, not for longer than a golden few moments between flows of traffic going past (I would sometimes count out the…

[thebibliosphere]

did you get hpv vaccines? theres /some/ evidence that it can be the trigger for pots in some (obv very few) people, i think it might have been for me so i have mixed feelings about it

I did not, but I want to get it done and will be doing so once I get my other more pressing vaccines out of the way because the benefit of preventing cervical cancer are worth it to me as someone with a family history of that cancer.

I’m going to say something that will likely get a lot of people’s backs up: but I do believe people when they say vaccines cause them to develop health issues like dysautonomia or MCAS.

How can I not when every time I get a vaccine it has to be done under strict observation with an epi pen at the ready?

But:

I also believe, based on my own research, talking to countless people with similar issues online and discussions with my own specialists, that those individuals were pre-disposed to such issues and if it hadn’t been the vaccine that got them, then it would have been something else that eventually caused the symptoms to develop.

There is an under-explored genetic factor to mast cell dysfunction and mast cells can play a role in autonomic failure conditions, like POTS, regardless of whether the person suffers the classic allergic reactions more commonly associated with mast cell dysfunction.

Sometimes, something triggers the immune system the wrong way and that’s the catalyst.

It could be a vaccine, or an otc medication safe enough to give to infants. Sometimes it’s a virus or a bacterial infection. Sometimes you’ll just be chugging along and your genetics decide to hit you with a steel chair. It’s unfortunately just your luck of the draw.

And I understand people get validly frustrated and angry when vaccines do this to them, because they’re doing the right thing to protect themselves. It’s just deeply unfortunate that they had this type of immune response that is poorly understood and unpredictable. My hope is that as mast cell research grows, solutions will be found to help prevent it or at least mediate it.

Personally, in the meantime, I’ll take the risk of the vaccine over what the virus might do to me, but that’s because I’ve seen what “mild” viruses can do to people when their immune system is already primed to self-destruct.

I’ve got friends who caught common colds and haven’t left their beds in years because it caused them to develop ME/CFS so severe they never bounced back. It’s wild all the ways the human body can break without killing us.

If the vaccine was the cause of your POTS, I’m sorry that happened to you. It’s shit when it happens. Hopefully it’s some small solace knowing you’re better protected from HPV and the complications that can arise from it, though I wouldn’t blame you if you’re not there yet. Grieving a chronic and lifelong condition like POTS is a shitty, difficult thing. I wish none of us had to go through it.

[heliza24]

I want to talk a little bit about Daniel in the Interview with the Vampire show, because the new trailer material has me stuck thinking about him, and also I’ve never written about how meaningful he is as disabled character to me before.

I don’t see many people thinking about show!Daniel in these terms, but he’s a canon disabled character. And I think the way he is written is just SO good. The acerbic wit, his relationship to doctors and his medication, his rueful acceptance of the way his disability has changed him. It is all so correct!! It’s really incredibly rare to have not only a disabled character written this well but specifically a chronically ill character written this well. His illness is always present; it doesn’t get forgotten about by the story. It gives Daniel insight into the vampires (more on this in a min), but it also gives Louis and Armand leverage over him. When Louis triggers his Parkinson’s symptoms? Deeply not ok. But that’s what made it such a great scene, and really made Louis feel dangerous and threateningin that moment. Armand and Louis arranging Daniel’s meds is a sign of great care and also great power over Daniel. It’s the perfect way to communicate the complicated power dynamic in their relationship.

I also just fucking love that this show takes place in 2022 and doesn’t erase the pandemic. Covid is a very present concern for Daniel and I cannot describe how validating that is for me as someone who is clinically vulnerable to Covid and who has had to really limit my life and take a lot of precautions because everyone else has decided to stop caring whether they pass on Covid or not. The fact that Daniel gets on a plane to Dubai is a BIG DEAL. He’s risking his life to talk to Louis and Armand before he’s even in the room with them. He really wants to be there. I have to make a similar calculation every time I travel, and trust me, getting on that plane knowing getting sick could spiral you into even worse health or kill you is really hard.

I think making Daniel disabled and including the pandemic is kind of a genius level decision on a thematic level. Of course Daniel is now facing down his mortality, which gives him a whole new lens on the vampires and the fact that he once asked them to turn him. And the pandemic further highlights his fragility, and is also possibly being used as a cover for drama that’s happening in the vampire world. But I think it also really sets Daniel up as a foil to Louis.

There’s a lot of analysis of the vampire chronicles that reads vampirism as a metaphor for queerness. But I would actually propose that it’s a much neater parallel for disability and illness in a lot of ways. So many of Louis’s initial experiences after being turned resonated with me, as someone who became chronically ill in my 20s. My appetite and relationship to food completely changed, much like Louis. My relationship with the outdoors and the sun changed, because of dysautonomia and allergy reasons. I was very mad, and very depressed, and I too have missed out on birthday parties and big life events like Louis did because I was too sick to go. Hell, you can even say that the way that Louis is treated as evil by his family, that the way vampires literally can’t be a part of society during the day, is reminiscent of ableist exclusion and ugly laws. (Ugly laws were laws that forbid disabled people, especially those with visible differences, from being out in public, and they were on the books in many American municipalities until the 1970s.) You can look at Lestat being an out and proud vampire in the first few episodes on the season and imploring Louis to leave his shame behind as a queer thing, but you can also view it as a disabled thing. Disabled people are portrayed as monstrous so often (and in a way that has gone relatively unexamined compared to say, the queer coded villain trope) that sometimes it’s just easier to embrace that label: I’m the monstrous Crip, but at least I’m not ashamed of or disgusted by who I am anymore.

I do think the real strength of this adaptation is that while you can find parallels between queerness or disability or other forms of marginalization with vampirism, ultimately it’s not a one-to-one parallel. It speaks to the real world but ultimately it is a gothic horror story about supernatural monsters. So I don’t mean to say that vampirism directly equals disability, because it does not. But I do think that making Daniel disabled was an intentional choice to help draw out some of those parallels, and I think the text is richer for it.

So Louis and Daniel have had these kind of parallel experiences of uncontrollable and difficult things happening to their bodies. It sets them up perfectly as foils, and even, I would argue, as the A plot and B Plot protagonists. This is one of my favorite ways of kind of examining the structure of a TV show (or maybe it’s that most of my favorite shows seem to be structured this way?). When TV was all episodic, it would be common to refer to the A plot (mystery of the week), B plot (interpersonal drama happening as the mystery gets solved) and C plot (any overarching plot tying the season together) in an episode. Now that stuff is serialized, there’s often a main protagonist, who has the main dramatic question and the most agency, and then there is often a secondary B plot that explores similar themes and mirrors the A plot, or presents a second main character who is the ldifferent side of the same coin” to the main protagonist. (My favorite example of this is Flint and Max in Black Sails, and I’ve also made the argument that Wilhelm and Sara fit this pattern in Young Royals.) In IwtV, Louis is obviously the main protagonist of the show, especially in the A Plot, which is the stuff taking place in New Orleans/Paris. But I would argue that Daniel is the protagonist of the B Plot set in Dubai. At the very least they’re intentionally set up as mirrors of each other:

They are both unreliable narrators, who are struggling with the way memory contorts (through memory erasure, illness, deliberate obfuscations, and just the passage of time). The most recent teaser trailer, where we hear Louis saying “I don’t remember that”, with panic in his voice, further underlined this similarity between Louis and Daniel to me. I don’t know if it means that Louis has also had his memory tampered with, as I’m assuming Daniel has, but I do think it means that Louis is going to be struggling with feeling out of control of his own narrative more in season 2, a thing that was already starting for Daniel in season 1.

They are also both locked into power struggles with people more powerful than they are. The fact that Louis is under Lestat in the flashbacks and above Daniel in the Dubai scenes in terms of power/status makes it all the more interesting. And, if we want to go ahead and assume that the Devils Minion’s years have happened in the past by the time we get to Dubai— it’s possible that both Daniel and Louis are united in being the less powerful partner in their own respective fucked up gothic romances.

They’re also both the audience’s entry point into their respective stories. Louis’s narration guides us into the world of vampires. Daniel’s questioning satisfies our human curiosity in Dubai.

I think one of the things that makes the show so special is the way that these two protagonists interact. In a lot of shows the a plot and the b plot stay pretty separate. I love talking about Black Sails for this because I think it’s such a good example; Flint and Max never exchange dialogue the entire show, even though they’re so clearly affecting each other the whole time. But the way that Louis and Daniel clash in Dubai is so exciting. We see them both wrestling for control of the narrative. It’s thrilling to watch and it just hammers home the theme of how complicated and changeable stories can be.

I am SO excited to see how the Dubai scenes play out in season 2 because of it. I really can’t wait. I’m really hoping we’ll see Daniel and Louis’s relationship evolve in surprising ways, and I’m holding my breath that we’ll get a lot of Armandaniel material to work with. (I have a whole other post drafted that’s much less smart than this one and is just me waxing poetic about Devil Minion’s theories which I may post at some point. You have been warned.)

I do have two wishes for Daniel in the new season, and they’re 1: that he gets to have romance/sex, because disabled (and older!) characters are so often seen as unworthy of being desired, and I would like to see that challenged and 2: that he continues to refuse to be turned/is not offered a vampiric cure for Parkinson’s. The magic cure for a disability or chronic illness is probably my least favorite disability trope, because it serves to erase disabled characters and representation from the narrative, and I want to see my experiences continue to be reflected in Daniel’s. That means that whatever ending Daniel’s story has will probably have at least a bit of tragedy baked into it, but I’m ok with that.

[covid-safer-hotties]

Back in early 2020, the news of the strange illness causing terrible pneumonias in China saddened me, but I believed I was safe in Canada. Within weeks, there was a reckoning: thousands were dying on my doorstep, too.

Directors of an independent living residence at the start of the pandemic asked me to become the residence’s COVID-19 advisor. They had no qualified medical staff, despite supporting elderly residents. Back in those early days, anyone with a medical qualification was commandeered to help in any way they could.

Confronted with the task of providing guidance to the nonmedical staff taking care of these residents, I decided to learn everything I could about the pandemic. At that time, about 1,000 papers were being published every month detailing research into every aspect of the coronavirus. Of course, I couldn’t read all of them, but I read as many as I could and built a breadth and depth of evidenced-based knowledge about SARS-CoV-2 and COVID-19. I wrote up the protocols and during my tenure as COVID-19 Advisor for this residence, we kept COVID out.

As a family physician seeing COVID-19 in my practice, I came to recognize that so many of my colleagues and patients had no idea how to keep themselves safe from the coronavirus, nor were they aware of its long-term risks. I saw the need to take action and effect change, which ultimately led me to becoming an advocate for Long COVID awareness.

I started the medical education company Kojala Medical, aiming to provide evidenced-based information about medical issues in a form patients could understand and reliably trust. I wanted a credible, trustworthy site to which I could refer my patients, colleagues, friends and family. We started with a focus on COVID-19 and have now expanded to Long COVID, with the site longcovidtheanswers.com.

I first learned about Long COVID in 2020 through publicity raised by the Body Politic COVID-19 support group, then became more alarmed as I read scientific articles about the disease.

Aside from the official death toll of over 7 million from COVID-19, Long COVID has emerged from the pandemic as the single biggest disaster to afflict humanity, yet very few people who are not sick with Long COVID are aware of it, want to know about it, believe in it, or even acknowledge that it’s happening. Sadly, many in the medical profession fall within that group of non and disbelievers.

This is bizarre, especially because of the impact of the disease. One recent review estimates more than 400 million global cases of Long COVID. I am furious that not enough is being done to alleviate this suffering. The injustice of yet another neglected and marginalized chronic illness that disproportionately affects women.

So, rather than sitting around waiting for ‘someone’ or ‘body’ to do something, I decided to act.

For me, medicine is fundamentally about aiding people to get as well as possible from any sickness they have — and even more importantly, preventing people from getting sick in the first place. In both of these regards, we are failing people with Long COVID dismally.

Long COVID is not the flu, it is a multisystem debilitating infection associated chronic condition. Developing Long COVID can be disabling and life-changing. Recovery remains low — and some manifestations like heart disease, dysautonomia, and myalgic encephalomyelitis (ME) may last a lifetime.

This is a terrifying situation to be in when, as a global community, we have chosen to act as though the pandemic is over and repeatedly expose ourselves to SARS-CoV-2, a grade 3 biohazard, with little to no protection.

As I read more and more research papers about Long COVID and looked at the inaction of global governments and my own profession, I feared that we were sleepwalking into a global mass disabling event unnecessarily, since we have many technologies available to prevent this.

Infection-associated chronic conditions do not have an established medical speciality, and are rarely taught in medical school. With the medical profession disengaged, people with Long COVID have been left to find answers for themselves.

My work aims to build on support groups, which have helped establish caring communities for people with Long COVID, but have also paved the way for us as scientists and medics to change the way we conduct research in a more patient-focused way. Nevertheless, they don’t entirely fulfill the need for evidence-based information about the disease in a readable format for nonmedical individuals.

I saw a huge need for a comprehensive website that would be of use to all people with Long COVID, their caregivers, the scientists researching the disease, and the multidisciplinary team of healthcare professionals that would be needed to rehabilitate them. Our organization believes that Long COVID The Answers meets those requirements.

There is also a pressing need to train medical professionals so that they will acknowledge Long COVID and feel confident about diagnosing and managing it. Inspired by an interview with Dr. Ric Arsenaeau, an expert in managing complex chronic diseases, my team and I created a podcast series: so that medical providers can receive continuing professional development/educational credits from watching this series.

The podcast series features a range of experts, including people with Long COVID, doctors, scientists, educators, and medical clinicians. Some of these experts also serve on our advisory board, overlooking and participating in the project.

Our site aims to raise awareness about the dangers of continuously exposing ourselves to a perilous virus with no thought of what it will cost us and our children.

This will mobilize the people of the world to demand that their leaders properly provide safe spaces for us all to prevent us from ever getting infected in the first place.

We need to mandate our governments to access all the mitigating technologies that we have in our roster, not only vaccination. The best way of managing Long COVID is to prevent people getting infected with SARS-CoV-2 in the first place!

We need national and international indoor clean air acts – to protect us from emerging pathogens.

For people with Long COVID, awareness will bring an educated and mobilized medical profession, governmental resources, financial and sociological support, and money for research — to facilitate treatments and, hopefully, a cure.

These are the main reasons why I jump out of bed in the morning with gusto, focus, and determination, and why I’ve poured all my money and my time into educating people about Long COVID.

Dr. Funmi Okunola is a British Family Physician who lives and works in Vancouver, Canada. She is the President and CEO of Kojala Medical, a digital medical education company behind COVID-19 The Answers and Long COVID The Answers.

[nikibogwater]

Everybody sit down and strap in, 'cause I have a doozy of a tale to share.

I've had anxiety for literally as long as I can remember. I've had periods of my life where it was so intense it became legitimately life-threatening (don't worry I promise this is going somewhere funny). And this was really bizarre because I have zero childhood trauma. Like, my family life is so idyllic it's almost comical. Therapists would do abuse screenings on me and look utterly baffled when I told them everything was fine at home. They'd interrogate my parents just to make sure I wasn't lying. I have one friend who I'm fairly sure believed I was just severely gaslighting myself when I said my family was great, school wasn't too stressful, and I've never lived in a dangerous neighborhood or experienced poverty.

Anyways, despite no one being able to figure out where my disorder was coming from, my doctors were able to help me manage the symptoms so that I would like, not die, and actually be able to finish high school. Which was awesome. Now fast forward to late 2021. My big sister (who has also had intense anxiety her whole life which no one could figure out why) is finishing up her doctorate and getting her physical therapist's license. Somehow, during all her studying and schooling, she finds out about this thing called Ehlers Danlos Syndrome, which explains literally everything that was going on with us. EDS is a connective tissue disorder that kinda fudges up your body in a whole bunch of little ways, including dysautonomia (episodes of very fast heart-rate that kick your body into fight-or-flight mode), and hypermobility (unusual flexibility). It's a spectrum disorder, so the severity of symptoms vary from person to person, but we definitely checked almost every box on the diagnostic list. My sister went to see a specialist, and yep, she was diagnosed EDS positive. She immediately calls my mom and goes "I know what's wrong with Niki" (thanks, sis, that's real encouraging lol). Initially we're like "okay Katie, that's nice" because honestly this kind of sounds like jumping at shadows, but I go in to see the specialist anyways just to make sure.

One consultation and diagnosis later, and suddenly my entire life makes perfect sense.

Now we get to the funny part. See, the diagnosis stuff happened in early 2022. So by the time late 2023 comes around and we're looking for a new dog (I promise this is relevant), we've been riding that chronic illness diagnosis for a while. Once again, my sister, ever the proactive one, decides she's going to help us get a new dog. She scours the adoption website, sends us photos of the cutest dogs available, and helps us make a decision. This is how we got Beverly, who has been an unstoppable force of chaos in our lives ever since we signed the papers (but she's also really cute so she can get away with it). Now on top of being a very excitable and anxious pupper, Beverly's got a weird little gimp in her hindquarters, which makes her sit all splayed-out and funny-looking, and while it doesn't seem to be causing her pain, we take her to a vet to get it checked out. Vet finds absolutely nothing. X-rays are taken and examined. Still nothing. At this point, they go "well, we could try a CT scan of her brain, which would run about $5,000, and maybe we could find something--" but my parents are already packing this dog into the car like "well that is a HARD nope." So we decide, look, Beverly seems happy and healthy, and those gimpy legs don't seem to bother her, so we'll just leave it be until it becomes clearer what's wrong with her because we do NOT have a cool $5,000 to throw around here.

Readers more astute than my family and I will likely have already figured out where this is going.

This morning, my mom is looking at Beverly sitting in her funny sprawled-out way, and something in her brain goes "wait...weird physical symptoms with no tracible cause that vets can see..." She does a bit of googling. Can dogs have EDS/Hypermobility? Yes. Yes they can. And the listed symptoms describe Beverly to a T.

So not only is my sister the one to finally figure out what's wrong with me, she also unknowingly got us a dog who has the exact same chronic condition as us. Meanwhile my poor dad, who is the only Normal Person in our house, is coming to terms with the fact that he is apparently just fated to always love chronically ill people and animals, and there's absolutely nothing he can do about it.