I am respectfully calling on Dysautonomia International, the World Health Organization, the National Institutes of Health, and the many other powers that be throughout our global medical and scientific communities to formally recognize Cholinergic Urticaria (CU) as a dysautonomic condition, or, one that stems from a dysfunctional autonomic nervous system (ANS). 

Irrespective of the sources available for us to consult, we are invariably met with conflicting, “expert” testaments to the prevalence, variability, and/or rarity of CU. For example, we need look no further than two (seemingly) peer-reviewed research publications afforded to us by the NIH's National Library of Medicine, which are not only readily accessible, but were published just a few weeks apart from one another toward the end of 2022. 

The first, titled Cholinergic Urticaria: Subtype Classification and Clinical Approach provides that the condition in question “is a common form of chronic inducible urticaria,” whereas the second publication, Cholinergic Urticaria: A Case Report, points out that “while urticaria can be common, cholinergic urticaria is a rare entity in primary care and is usually overlooked.” While my personal experiences leave me inclined to side more with the latter publication, at the end of the day, the only thing that is omnipresent about CU is the ignorance thereof. Accordingly, it is tremendously difficult to gauge the extent to which CU impacts populations worldwide. 

In the event that those reading this petition are unaware, characteristically, doctors, academics, scholars, and scientists alike tend not to be the biggest fans of Reddit, and there are plenty of valid reasons for this. However, if both my own health experiences and the health experiences others have shared with me are to be lent just an ounce of credence, then there are a myriad of illegitimate reasons for this. You see, there are 4,000 individuals who belong to the Cholinergic Urticaria subreddit. On a daily basis, they will share their insights, updates, and stories since the onset of their respective cases of CU. Many will share pictures of their urticarial lesions to show the emergence of symptoms, their progression since getting diagnosed, and in a number of cases, their regression since diagnosis. 

While I cannot speak to precisely how many there are, countless people visit this subreddit every day to learn from the members, to gauge whether they have CU after doing some preliminary research on their symptoms, and in cases such as my own and two others', to familiarize themselves with what they might be in store for. Unfortunately, due to how misunderstood, mischaracterized, and neglected this condition has historically been, many of those who engage with the CU subreddit articulate experiences and sentiments which are exceedingly disheartening and disconcerting. 

Many post about how they have suffered from CU for years, how it has adversely impacted virtually every aspect of their daily routines, and how after years of little-to-no relief, they feel as if they have no other option but to contemplate suicide. Every time I encounter a post like this, it makes my stomach churn. Why? Because when someone with a condition like CU goes through the mill, jumping from doctor to doctor in search of merely one answer that will afford them some relief, only to find themselves back at square one, despair can far too easily envelop them. 
In fact, I know just how it feels to be immersed in the debilitation ushered in by CU, how it feels after seeing every kind of physician in the book and making zero progress, as well as how it feels to swallow the tangible, real-world ramifications that a refractory case of CU can bring about, such as job loss, a diminished social life, and a standstill in education. 

While I myself was far too determined to figure out how to control my CU as opposed to throwing in the towel, I know exactly how the individuals writing these kinds of posts feel. They feel as if there is not even the faintest light at the end of the tunnel for them, a feeling solidified by the very medical “experts” they see who cannot seem to grasp the nature, magnitude, or complexities of this disease in any respect. They feel rebuffed and unheeded, misunderstood and confused. You might be posing to yourself, “what is this guy driving at?” I will tell you. 

For there to be anyone out there who is suffering from CU, and feels as if their only way out of the incessant misery is to take their own life, there needs to be a shift in the way this condition is approached by modern medicine, plain and simple. You see, the standard protocol of throwing H1 and H2-antihistamine cocktails at patients until they have Allegra coming out their nose and Xyzal coming out their ears, hoping that at least one of these cocktails eventually sticks, simply does not work. It has proven itself to be patently inefficient and ineffective, and on account of this, quite detrimental to the hope CU patients have for relief. So, what am I suggesting? I am suggesting we change gears. 

I am not propounding that we should drastically deviate from the protocol that has, in a number of cases, provided CU patients with symptomatic relief. Rather, I am proposing and strongly encouraging the designation of CU as a condition of Dysautonomia, for the purpose of paving the way for more research, refined treatment protocols, and above all, a more comprehensive understanding of CU among the modern medical and scientific communities. To be frank, why I seem to be the first, if not one of the first to publicly call for this designation, is beyond me, as when we delve into the pathology behind CU, its etiology, its symptoms, its manifestations, and the internal systems it can affect, we see a condition that should have inherently been classified as one of autonomic dysfunction from the get-go. 

The autonomic nervous system (ANS) plays a pivotal role in regulating involuntary bodily functions like heart rate, sweating, and digestion, which are essential for maintaining internal homeostasis. The ANS is divided into two main branches – the sympathetic nervous system (SNS) and the parasympathetic nervous system (PNS), which work in opposition or synergy to engender said homeostasis. As part of the PNS, we have the cholinergic system, which is not only a vital component of the ANS, but particularly implicated in CU. 

This system is comprised of cholinergic nerve fibers, neurons that release the neurotransmitter acetylcholine, and cholinergic receptors, which assist in the regulation of the aforementioned involuntary functions by mediating physiological responses. Regarding perspiration, normally, acetylcholine acts on the cholinergic receptors and is released, thereby stimulating the sweat glands and aiding in thermoregulation. However, with CU, the dysregulation of the cholinergic system becomes all too apparent, for upon the release of acetylcholine, it prompts the activation of mast cells in the skin, and the subsequent release of histamine and other inflammatory mediators, leading to the characteristic symptoms of hives, itching, and pain.

Such dysfunction underscores the intricate connection between CU, the cholinergic system, the PNS, and the broader autonomic network. In essence, when we examine CU closely, it becomes increasingly evident that the counterbalancing act conventionally ushered in by the SNS and PNS fails to come to fruition, and therefore, that its classification as a form of autonomic dysfunction is warranted. 

According to The Dysautonomia Project, most healthcare providers “receive fewer than 2 hours of training on autonomic disorders in medical school.” Now, if you have made it this far into the petition, the odds are that you have asked yourself at least once, “who is this guy, why should he be taken seriously, and how does he have the gall to call for any degree of change in the medical sphere?” Because I am a patient, and though I do not have any formal training on Dysautonomia, I can assure you that I have far more than two hours under my belt of research, investigation, and experimentation, and the reason for this is quite simple.

When looking back on the various physicians I saw throughout my journey with CU, only one of them mentioned Dysautonomia to me, whereas the rest of them, to be perfectly candid, were out to lunch on the subject entirely. This should not have been the case, and it should cease to be so, for it was not until the concept of Dysautonomia entered my orbit, while dealing with CU, that I came to uncover diagnoses of small fiber neuropathy (SFN) and postural orthostatic tachycardia syndrome (POTS), two of the most common forms of autonomic dysfunction. I would not be on the other side of CU if not for the surfacing of these two disorders, hence the hope that this will garner enough attention to impel providers to reevaluate what they do know, and confront what they do not.