"Dysautonomia affects men and women"
I wanted to write a little bit about this disease on how it does affect both sex. As you will see, many women are not afraid to share their health concerns and issues compared to men. You will see many blogs of women and Dysautonomia but, where are the men? Very few men will share.
Dysautonomia is not just a female disease. It is a disease of both male and female. We need more men to share their stories who have Dysautonomia or, believe they have it but are afraid to come forward with it.
Good example on how I know is because my son has Dysautonomia. That is correct. My son got it from "me". It is called "Genetics" in my case.
We all have hormones in our bodies and, hormones play a big part with Dysautonomia.
The reasons this disease is on the rise here in America because, this disease arises from different parts of Europe. Especially Germany or, Russia as a good example of where it might of started. We are mostly or, maybe all pretty mixed with different ethnic backgrounds. We are no longer just one breed.
I feel what is important is we all need to figure out our family history. For example: "Who are our ancestors and what countries are they from?" "What types of diseases did some of our ancestors have back in the days?" And the list goes on.
If we can find some answers, we will be very surprised on what we find. If we want people to research like Scientist and Doctor's on this disease, we need to give them a history of health concerns from our ancestor's. This could be "one" of the reasons we are not able to find a cure yet.
Some people might be on protocol on certain medications but, it does not work for everybody because, we are all different. Dysautonomia is different in each and every one of us. There are different levels of Dysautonomia.
So to conclude, men are as much at risk as women. We need every single person/sex who have Dysautonomia to keep coming forward and sharing their stories. We need more men to come forward about this disease. Don't hold back. The more we speak the more we will come closer to some type of help and hopefully in the near future, a cure. Until then, keep spreading awareness.
Till my next blog, feel free to contact me through e-mail if you have any questions or concerns. To remind you, I am not a doctor but learning from doctor's who know about this disease. I am here to help out and hopefully succeed in some way so that everyone can live a happy and healthy life.
Dysautonomia is not just a female disease. It is a disease of both male and female. We need more men to share their stories who have Dysautonomia or, believe they have it but are afraid to come forward with it.
Good example on how I know is because my son has Dysautonomia. That is correct. My son got it from "me". It is called "Genetics" in my case.
We all have hormones in our bodies and, hormones play a big part with Dysautonomia.
The reasons this disease is on the rise here in America because, this disease arises from different parts of Europe. Especially Germany or, Russia as a good example of where it might of started. We are mostly or, maybe all pretty mixed with different ethnic backgrounds. We are no longer just one breed.
I feel what is important is we all need to figure out our family history. For example: "Who are our ancestors and what countries are they from?" "What types of diseases did some of our ancestors have back in the days?" And the list goes on.
If we can find some answers, we will be very surprised on what we find. If we want people to research like Scientist and Doctor's on this disease, we need to give them a history of health concerns from our ancestor's. This could be "one" of the reasons we are not able to find a cure yet.
Some people might be on protocol on certain medications but, it does not work for everybody because, we are all different. Dysautonomia is different in each and every one of us. There are different levels of Dysautonomia.
So to conclude, men are as much at risk as women. We need every single person/sex who have Dysautonomia to keep coming forward and sharing their stories. We need more men to come forward about this disease. Don't hold back. The more we speak the more we will come closer to some type of help and hopefully in the near future, a cure. Until then, keep spreading awareness.
Till my next blog, feel free to contact me through e-mail if you have any questions or concerns. To remind you, I am not a doctor but learning from doctor's who know about this disease. I am here to help out and hopefully succeed in some way so that everyone can live a happy and healthy life.
Haven't been diagnosed yet, am going to the Mayo Clinic next month, after years of symptoms I'm guessing that's what they're going to come up with. I'm a 43 year old male, been having symptoms for 12 years, things have gotten worse over the past 18 months. Not much support online for men with this condition, support groups are geared towards women and some go so far as to shun men, it's sad. Thanks for sharing, God Bless your son
ReplyDeleteMy prayers are with you Zach. Never give up. You deserve a proper diagnoses. Thank you so much for your kind words. Keep me posted. I hear the Mayo Clinic has helped many. You hear good things and bad in any medical field when it comes to being diagnosed properly. I support male and females. Dysautonomia can happen to any sex. I wish more men would write about this Dysautonomia. It is important to get the word out. It affects any gender. Once again, much luck to you Zach. Blessings...The writer of Dysautonomia Mania
ReplyDeleteYo Viv...
ReplyDeleteit might be easier to get guys to report on the downlow...
and also by linking to other conditions that primarily affect women ... as the overall relationship between both support and medical groups are the same.
Sure, some of this is related to the fragile male ego but it's the same kind of sexism women get when they're trying to get diagnosed too.
It plays out the same with many doctors and psychiatrists believing dysautonomia (if they've heard of it at all) to be much rarer than it is and then we have the additional factor with the problems of the gender/sex ratio... most doctors, even specialists, are less inclined to diagnosis blokes with it.
Many will more likely be diagnosed with a thought or mood disorder, (or for the syncope & seizure crowd... with epilepsy) as many women with dysautonomia may as well, and find that some of medications prescribed for those may result in a minimal to even moderate improvement (somewhere split between the uppers or mostly downers they give).. and even if you're still being plagued by other symptoms, that is a pretty hefty blow to one's ego.. that maybe that really is all it is. Or a larger part of it. (I'm trying not to alienate the crowd here that may have a thought/mood disorder and also dysautonomia, but let's face it, there's a lot more of us with false diagnoses in those areas, even if they have to forcibly hammer us in to make it fit.)
and blokes in general are the highest on the list for mental health conditions... also for epilepsy, early heart attacks, and the wide assortment of issues that may surround many of dysautonomia's symptoms.
(which ironically, is the reason why many women have difficulty finding a diagnosis too because of the symptoms they're having... And that is frustratingly funny, the kind of absurdity that surrounds all this.. many of the symptoms are masculinized, but the conditions are feminized.)
And that's true with many other conditions that predominately affect one gender/sex (and/or group, population) more than the other...
ReplyDeletebut it's more of a psycho game where the sex ratio differs.. there as many (cis and especially straight) women that wouldn't want to admit to having what some might consider a masculine condition as there is to (cis and especially straight) men having what some might consider a feminine condition. . . even if they aren't affected by the pink and blue conspiracy, the games of gender and identity that might come into play... we've got the (often ignorant, sometimes willfully so and many more trolls) public to deal with
-- one of the prime examples is reviewing men with breast cancer.. the support groups, even a few of the marathons refuse to let men race for the cure... because they're afraid it will turn it all into a joke.
Although that kind of falls into another area, particularly where there's public funding and donations involved... like I know a few of my other dysautonomia friends are feeling a bit left out or treated like sideshows... as while dysautonomia is starting to get out, it's beginning to take the approach of focusing on children instead --- to which people in the public are more apt to empathize with than disabled or health impaired adults (or even teens) which many (in the public) feel are somehow more personally to blame (while teens are more likely to be treated as if they're just faking it, wanting to be special little snowflakes) -- there's a lot of societal (and historical) resentments in the mix that are so much bigger than all of this.
but if you're looking to offer support to your son and Zach, and trying to invite other men into the mix...
ReplyDeleteshort handed media might be the best solution.
From twitter to tumblr (photo sharing sites) to vines (30 sec videos)...
less memes than actually presenting some of the horrors of it but balanced with a lighthearted, although probably sarcastic dark brand of humor.
How do I put it? It's leaving the real discussion of it to the sidelines, to the comments, to other people... while only offering a snapshot of your life and maybe some links to popular or localized organizations.
More the casual surprise that this person they know from z/y/x has dysautonomia... rather than the other way around.
I've often wondered, secretly plotted, on breaking up Liam's video into smaller clips... leaving much of it out of context.. to see how others (the public) would react: https://www.youtube.com/watch?v=RlzcIAiO1yY
but then, it's not really my place to.. and I know it would probably anger some of the community too, but how we normalize it is by interacting with a wider community and making people less afraid of it...
and I, wholly, believe this is more easily, better achieved by casually than through being the after school special or medical episode of the week..
but it's also making the point to be more open about it in our daily lives... little casual hints, hints which invite people in our lives (or just on the outside) to ask questions, but largely try to seek the information out for themselves..
create a market for it, for us..
'sides, few of us can handle being the official (non official) spokesperson for the entire community...
it's a lot easier, a bit more fun being a troll to it.. and ourselves
I mean instead of exhaustively talking about procedures, treatments, pills and personal hangups...
like I'm going to the doctors today, so they can hang me upside down until my heart crashes, I writhe in pain or they empty all the change from my pockets.
... many more people will relate to the last one.
And some of that, setting up those kind of narratives may work better in attracting men to speak out...
to poke fun at their own insecurities with it, being able to express their frustrations without sounding like typical angry guy....
and being able to be a bit of a jerkarse like when or if other people say "But doesn't that only (mostly) affect women?" ... "Huh? It does? I guess that's why women like me so much"
-- it's also the sort of thing might lower the tensions between inner community groups...
humor, especially sick humor is something we all can relate to...
like asking the good peeps of social media
"If they were in a snail race, what kind of snail would they be?"
-- "I'd be the slick back at the starting line because I had too much salt in my diet"
-- hmm, actually, you know, maybe someone should just make an dysautonomia humor site...
from dad jokes to mum jokes to WTF IS WRONG WITH YOU variety (I have dysautonomia, and I just stubbed my toe too.)
(... there's so many things that we, ourselves, need to talk about in dealing with these kind of issues.. that are easy to address because of the humor, because things get too personal, deep, dark, banging against the wall frustrating or just gross... really, really gross... it gives us a wider range than the clinical environment or the pseudo social support groups... which are often sterile or a wee bit too serious... and of course, when you get a group of us together outside of 'official' environments... ah, all the things that come out.. even if a bit inappropriate, or asking the waiter for another round of salt (all the salt, no tequila; which should be the name of an all dysautonomia band... but are there any rock ballads for the triangle?))