ENS Syndrome: Invisible sufferers

We, the ENS Syndrome community have unfortunately suffered the negative effects of nasal turbinate reduction and related surgeries. On top of this life altering outcome of being diagnosed with ENS, a substantial amount of individuals globally are impacted being left without viable treatments or guidance due to the lack of acknowledgment of this growing syndrome.

 "Chhabra and Houser, however, estimate a rate of 20% following inferior turbinate resection"-N. Chhabra, S.M. Houser,The diagnosis and management of empty nose syndrome Otolaryngol Clin North Am, 42(2009), pp. 311-330).

This ultimately puts sufferers in a medically unqualified position to treat themselves as turbinates that are no longer functional. Patients are left desperately trying experimental therapies not covered by insurance in attempt to restore what has been injured. This causes further long term decline in overall health and quality of life.

The vast majority who deal with the devastating symptoms of ENS experience severe and chronic symptoms such as lack of airflow communication to the brain;  breathlessness, dysphagia, suffocation, lack of airflow resistance, damage to normal nasal functions/mucosal flow, nerve pain, sensitivities to environmental/weather changes, autonomic nervous system disturbances, sleep deprivation, cognitive decline, and a plethora of symptoms that cause severe long term health issues.

To further understand the importance of these organs, nasal turbinates also play a vital role in having the ability to sense airflow in conjunction with keeping the nasal mucosa healthy and free of outside toxins, regulating airflow, cleansing the nasal passages through mucus secretion, a long with sending important signals to the brain.

Recent studies have also shown connections to the limbic system to explain the chronic distress in ens patients. "In addition, there are fibers from the Cranial Fifth Nerve that require activation, and therefore the absence of that pressure is distressing."-Freund W, Wunderlich AP, Stöcker T, Schmitz BL, Scheithauer MO.(Empty nose syndrome: limbic system activation observed by functional magnetic resonance imaging.)

As of current day, this syndrome has no formal medical code or a significant acknowledgement from the medical community. Additionally, only a scarce  amount of Ear, Nose and Throat (ENT) specialists globally attempt to treat this horrific condition. This syndrome as mentioned prior causes irreversible damage to the nasal turbinates, which has unfortunately resulted in an increase of sufferers attempting or actually taking their lives by suicide. This is primarily due to the extreme severity of symptoms and lack of treatment that accompanies Empty Nose Syndrome.

Our communities objective is to ultimately have formal medical recognition, further research/advancements in treatments, followed by collaborative efforts from medical and scientific institutions to give suffers hope for more effective regenerative treatments. Moreover, the ENS community urges ENT governing bodies to enact guidelines that require medical management approaches to be tried before proceeding with turbinate surgery, as many health and environmental related factors effect the nasal turbinates.

With your signature and help, we can shed light and hope to an underserved community that constantly feels invisible due to the lack of recognition and understanding in correcting the negative outcome of turbinate and related surgeries. These sensitive organs only come once in a lifetime. A human being should never be in a position to have their basic human right to breathe and function efficiently taken away.

We greatly appreciate your acknowledgment, and many thanks for your support!

With great strength and courage,

The ENS community