Unfortunately, the current plight for many ENS sufferers is that we remain very sick and completely disabled with our chronic debilitating symptoms, we suffer alone, often with marginalization of our concerns from family, friends, and even the medical community who initially caused ENS. It is very hard to make people who do not have ENS comprehend the gravity of our situation, even those people who seem to know us best. Research has shown that chronic sinusitis has been considered to impact one’s quality of life similar to having congestive heart failure, low back pain, or rheumatoid arthritis. But what impact does ENS have on quality of life? It has a far more debilitating impact on our quality of life than chronic sinusitis! Currently available treatment options - implants and injections - offer some help and hope, but they are unfortunately not helpful enough; after getting treatment, most ENS patients still remain highly disabled, even if they receive some improvement to their condition. Moreover, the existing treatment options require great expense and travel, as insurance does not yet recognize the condition.
Make no mistake: great progress has been made in recent years with respect to both treatment options and understanding. A few courageous physicians have offered us promising treatments for which we are extremely grateful, and we do believe the tide is turning with respect to a better understanding for ENS. Yet, despite this progress, we still have a long way to go. There is still too much ignorance out there and too little help. Consequently, it is more important than ever for ENS sufferers to bond together as a community and united front. We must be: Organized. Unified. Empowered. With Purpose.
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