Hi, I’m Tami, and I have psoriasis and psoriatic arthritis.  I am writing this during a 7 hour train ride to my Eastern Volunteer Conference for the National Psoriasis Foundation.  After hiding my Flakes and scales for 20 years, I discovered Advocacy, and it has changed my life. 

In my old life (before 2008), I was a psoriasis hider. I would do just about anything to avoid anyone seeing the thick patches on my scalp and ears, and the shiny red patches under my arms, inside my elbows, and behind my knees, and I sure wasn’t showing anyone the patches in my groin, under my breasts and in the crack of my bum!!  I even was embarrassed for my husband to see it, because it made me feel dirty. I’d take a shower, use my stinky coal tar shampoo, put on all my creams and potions (sprays for scalp, this cream for the ears, this one for eyelids and “sensitive areas”, and by the time I was done, I felt dirty again. I’ve never been one to have “flares” of psoriasis, I just have it. All. The. Time. 

In 2008, I had been fighting with my fingers, toes, ankles  and wrists being so painful and swollen, and none of the doctors I saw had an explanation, except that “at my age” things would start to get achy…I was 37…Finally, my Dermatologist took a look at my fat fingers and diagnosed me with psoriatic arthritis. Eureka!!!!  Now, what’s that, and how do I fix it??  Turns out it’s not that simple. Because 11 years later, I have failed 7 biologics, methotrexate, cyclosporine, laser treatments, soriataine and more topicals than you can shake a stick at. I have managed a 6 month remission-6 glorious months of no creams, no hair gunk, no psoriasis falling out of my nose-before it came back with a vengeance. 

I have lost my hair, lost fingernails, I’ve worn wigs, buffs, bandanas, whatever. I closed my franchise, we bought a one story house and moved out of my dream house so I could avoid steps, and just kept on. 5 years ago, I was still doing mud runs and hanging out at the gym, all on the advise of a doctor. 3 years ago, I was on disability. It’s what also happened 3 years ago that led me to this train ride today. 

In early 2016, I got my National Psoriasis Foundation newsletter email, and something caught my eye.  It was an invitation to join the NPF at the FDA for a day long meeting. I decided to go, and I never, ever imagined what it would be like. It was 2 days of people telling my story, finishing my sentences and struggling just like I did. It was incredible, and amazing, and it blew my mind. 

It doesn’t fix everything. I’m still disabled, I’ve had my CMC joints replaced, I get some pretty regular and pretty unpleasant procedures done on my spine, and many times I still feel dirty, and unloveable and scared to death. But I have a husband who loves me, Flakes, bald head, bum crack scales and all. And I have these amazing friends who have become my family-our family.  I have become an eager advocate, mentor and volunteer; I’ve learned how to talk about a bill, then talk to someone newly diagnosed who feels all those same feelings I did. And it helps me to work through my own things, talking it through with someone else. It also helps my husband to talk with other people with psoriasis as well as their families. 

So in 20 minutes, I’ll get off this train and spend the weekend talking about fundraising, about state and federal advocacy, and about being a voice for the newly diagnosed. And I will be hanging with my people. And it hits me-I had to lose almost everything to find my passion. At least these Flakes were good for something. 

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