Tag: #NPFAdvocacy

I was asked recently, Why do you volunteer?


This is a 2 part answer, and I would like to give a little background. First, in February 2007 I was then diagnosed with Psoriasis. I got a second opinion in 2009. It was around August or September. It was then that I googled Psoriasis and clicked on image search. Boy that scared the crap out of me, it was then that I read there is no cure, this is a lifetime thing, your life as been changed….

In that same search, I also saw ads for the National Psoriasis Foundation. Talk to a mentor, someone who has already been through what you are going through, and get a free book bag with a few items inside. Hmmm. A mentor I thought…. Yes, I would like that. I signed up, a mentor was assigned to me, and we talked, texted, emailed. I thought, wow this dude has had it for 20 years, he’s been covered with Psoriasis, has Psoriatic Arthritis. I’ve never been that bad, I felt better already. It also helped that he is in my state, is within a couple of years of my age! This is crazy.

About a year later they asked my mentor if he knew anyone who would be a good mentor, he gave my name. You see being in IT I know what to google, and I’m good at avoiding snake oils and separating fact from fiction, plus now I also have personal experience, almost 5 years of this uncomfortable disease. When the National Psoriasis Foundation called and asked I immediately said yes. I felt it was fair as I got a lot out of the program and felt I should give something back. Fair yes?

I then took the training and became a mentor. Some mentees were only there for the free book bag or whatever. I signed up and never replied to emails. Ok I understand, no problem, but then I got a couple of mentees thanking me for my help, telling me they felt better, this made me feel good. It is addictive actually. The feeling you get when someone says thanks, I feel better. Or thank you, you changed my life. Whoa. I can’t tell you how good that feels. The feeling never gets old. It feels awesome every time, and it doesn’t matter if you talk to someone for a minute or a month. You helped them, and that is what matters. 

This is now my life. If I’m not in the office I am wearing some kind of Psoriasis t-shirt and people will stop me and ask questions. I sometimes see doctors and tell them about the new medications coming out or other advances we have seen. Once while seeing my dermatologist I was joking, hurry doc I need my fix, give me that needle! He laughed and said he wished all patients were so willing to be on biologics. I asked for an explanation to which he said, people are afraid of the black box warnings (side effects, etc on the label). I handed him a couple of my business cards and said have them call me. 

Now if he feels that they need the biologic I can talk to them. Once again a month and a half after talking to someone I got a call, ‘DUDE! You changed my life! I went from 90% to almost clear!’ That totally made my day! 

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Capitol Hill

Next week i am travelling to Capitol Hill with the National Psoriasis Foundation to speak with congress about Psoriatic diseases. The NPF sent this:

“Each year, the National Psoriasis Foundation (NPF) brings a select delegation of psoriasis patient advocates, research scientists and medical professionals to Capitol Hill to meet with Members of Congress and their staff to advocate for greater federal attention for psoriatic disease research and programs. This unique mix of researchers speaking about promising areas of psoriasis research and future opportunities, alongside patients sharing about why psoriasis is so important to them personally is very powerful.”

Each of us has a story to tell. We are all different come from different states, towns etc, however we pretty much have the same story. I was happy and healthy and WHAM-O! Psoriasis/Psoriatic Arthritis ripped the rug out from under my feet. I went from 100%- 10% in no time. Dont get me wrong there are many days i feel fine, but then there are days i want to crawl under the blankets and i dont want to talk to anyone, because even talking would be too much effort.

I am relaxing now to hopefully be ready and give this my all, as the more people that hear my story and others like mine the more efforts there will be into finding a cure for this horrible disease. I dont know right now how many pictures ill be able to take or whatever but i do hope to post a few so you all can follow along on my trip to DC.

Questions? Comments? Please feel free!