Voices Across America

My Patient Story

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Tami

State: Pennsylvania
Congressional District: PA17

Diseases

Chronic Pain, Skin Disease

Issues and Challenges

Tami has encountered: Access to Expert Providers, Access to Medicine, Disability

My Story

In late 2015, I was in a vicious cycle of treatments for psoriasis and permanent joint damage from psoriatic arthritis. It seemed my life was a futile circle of steroid injections, nerve ablations and failing biologics. As a 47-year-old, who only 2 years earlier had been a self described “gym rat” and lover of obstacle course runs, I was absolutely devastated. It seemed that not only had psoriasis ruled my life for almost 20 years, but its spiteful sibling was intent on doing the same. In just 7 years, it had taken my 5-year-old franchise, my dream home with all the steps, and now my ability to work for a living.

My body hated me, obviously. I was 40 pounds overweight from steroids and inactivity, bald and in a bad place emotionally.
In early 2016, I received an email from the National Psoriasis Foundation announcing a PFDD (Patient Focused Drug Development Public Meeting) on psoriasis at the FDA. FDA-led Patient-Focused Drug Development (PFDD) Public Meetings | FDA On an impulse, I decided to attend. It was a decision that quite literally changed my life. For the first time ever, I met other people with psoriasis, who were all telling the same story as I was! It opened a whole new world to me, one where I was not alone, and didn’t have to hide. I was hooked on the spot!

Within months, I was an NPF volunteer, One to One patient mentor, an advocate, and was planning my first ever Do It Yourself fundraiser. I won an NPF award for that first fundraiser in 2018 and was nominated for Outstanding Volunteer-an award I actually won in 2019! I was invited to the 2017 NPF Capitol Hill Fly-in to visit the offices of my Congressional Reps and Senators, to tell my story of living with psoriatic disease. I have attended every year since. I have attended state Hill days and met with my reps in district. It woke up a passion in me that I never knew existed, and also allowed me to become open and vocal about my disease.

And the best part? The people I have met…the mentees that have become friends, my fellow advocates and volunteers, their families. We have become family. I have laughed and cried with these amazing people, traveled with them, met up at conferences and events, and some have even traveled to my fundraiser, which is now an annual event. These are the people who have changed my life, who have given me back the life I thought I lost. I owe them so very much.

My disease has not gone away. I have had surgeries, hospitalizations, and plenty of procedures. I have failed 4 more biologics and am collecting comorbidities like postage stamps. I am permanently disabled. But I have these people-my psoriatic family, mentees who need me to help them manage the emotions of their disease, people in power who need to know that there are humans connected to all their health care decisions. I have a purpose. I have a passion. I have a life. I have so much, all because of one impulsive decision.

My Motivation and Inspiration

I am motivated to help others with my disease walk an easier road than I did.

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