“October is Dysautonomia Awareness Month, and more people than ever are talking about this in the medical community and in the general public, but whose symptoms will be taken seriously by these new clinics and researchers?” via WMC's the_fbomb
That’s how it’s been for a very long time in this community, meaning that treatment and research have also been in short supply despite the prevalence of our suffering. Dysautonomia International’s co-founderabout women’s experiences with health care in 2018. “Assuming POTS impacts the more conservative estimate of 1 million patients, it’s getting 1 million dollars a year at NIH; MS impacts 400,000 patients and gets over 100 million dollars a year,” Stiles pointed out.
Dysautonomia can be debilitating even if you “look healthy” on the outside, which many people with long COVID are learning.and it’s clear that dysautonomia is a lose-lose situation to cope with as a patient. Newcomers are shocked to find that even if their symptoms are truly debilitating, they can still be brushed off or told that it’s because of stress. That isn’t to say that psychological things don’t influence dysautonomia; stress can and does exacerbate dysautonomia.
October is Dysautonomia Awareness Month, and more people than ever are talking about this in the medical community and in the general public. I am thrilled about the change in discourse, but I’m also hesitant about it.
I’m not mad about the new attention and funding directed at dysautonomia; we need it desperately. But we’ve needed it forWhen the problem was pervasive but mostly impacting young women, it was apparently not worth attention, funding, or validation. Now that it is a literally contagious issue — now that our suffering can be caught by men — it is a revolutionary priority in the medical and public health fields.
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