#coopforacure: Psoriatic Arthritis Research, Awareness, & Treatment

After nine years of having a Rheumatoid Arthritis misdiagnosis, and multiple doctors and experts later, I advocated for myself and finally obtained the correct diagnosis, treatment, and proper care team. I am raising funds for the NYU Langone Psoriatic Arthritis Center - the only one of its kind in the US. PSA doesn’t just attack the joints, the gut, the skin and the scalp; it has an indescribable impact on the psyche that can’t be articulated or quantified. It’s quite literally an invisible disease with somewhat devastating symptoms. And still, in 2023, it’s still an enigma; a blood panel, x-rays and thorough examination and appointment with an accomplished and erudite physician doesn’t necessarily result in a diagnosis or proper course of treatment. So let’s change this.

What’s so jarring (among many things to be frank) is this: once properly diagnosed, access to the treatment and the most recent advances in care, namely i7 inhibitors/ biologics, aren’t even available to most Americans living with PSA. The lack of quality generics - and even the ability to obtain medication at a local pharmacy - disproportionately hurts those without adequate insurance or even those with reasonable incomes. Talk about adding insult to injury.

Let’s fight to shed a light on this invisible disease. Let’s advocate in DC, spread awareness globally, fund much need research, and find a legitimate way to make a proper diagnosis in year 1, not year 9. And let’s not put the onus of finding the right answers on the patient. Lastly, let’s work to create and disseminate the proper resources and tools to support the mental health and well-being of those living with PSA. While this chronic disease does quite a number on and in the body, the chronic toll it takes on the psyche and one’s quality of life is arguably as, if not more, inflammatory.

This campaign is dedicated to Vera Kutcher Schapps, the ultimate philanthropist who lived by the motor, “charity brings at home.”