Ready. Set. SNOW!!
I was asked to fly out to Washington, DC this past week to be present for the National Psoriasis Foundation’s (NPF) Annual Capitol Hill Day. This is an annual event that NPF hosts to give us patients the opportunity to voice our experience and hope for Congress’ support for research funding and medication/treatment advancements. WHAT AN OPPORTUNITY?!!!
I was all set to go and pulling up to SFO International when I received a notification that my flight was canceled due to crazy amounts of snow landing the same time I was scheduled to land! Bummer! Nevertheless, my voice will not be muted. I’d like to share my story with you. The story that I was going to share in Congressman Mark DeSaulnier’s office.
HELP IMPROVE LIFE FOR PATIENTS WITH PSA
I have Psoriatic Disease. I was only diagnosed in 2012 but after knowing much more about the disease and its symptoms today, I believe that I have had it (visible at least) since around 2008. Sadly, even going to my annual physical check-ups and whatnot, the typical diagnosis would be a rash or allergic reaction to something.
I was an active individual. I was a CrossFit competitor, I was a Junior Pro-Am ballroom dancer, I was a Hawaiian and Tahitian dancer, I was a runner, I was a skier, I was a dental hygienist. Then after being diagnosed with Psoriasis, I was unable to walk especially unable to run, I was unable to dance, I was unable to keep my balance, I was unable to hold my instruments, I was “contagious”, I was always “sick”. Untreated, my Psoriasis advanced rapidly and I was diagnosed with Psoriatic Arthritis only within months of my initial diagnosis. It was hard when I myself didn’t understand the disease, but it made it almost impossible to be out in the world with visible markings all over me and the inability to function without pain when others were not aware of what Psoriasis really was. Even with the commercials that came out early on, Psoriasis was either: a “rash” or “arthritis”. In some ways, we (patients) didn’t want the disease to be serious enough for others to be afraid of us, but yes serious enough for the medical world to treat us with a sense of urgency.
Even with the latest and greatest medical updates about Psoriatic Disease, there are just so many unknowns.
Funding these appropriations asks* for psoriatic disease research along with the PATA* bill will put us in a position to truly be able to target better diagnosis and valuable treatment options; allowing patients to be able to afford better treatments and live fuller (almost close to normal or consistent new normal) lives.
People always ask me why I am so involved since I “look so normal”. And yes, today I have learned how to cope with my disease, I have learned to smile through the pain so that others can know that they can also, I have learned and practice holistic methods that can allow for better mobility, I have learned to dress so that I can appear fine with my body. BUT to be very candid .. even though there are many experiences to hurt from .. there was one instance that will have forever changed me. There was this one time that my friends and family were out swimming and as I lowered myself gingerly into the hot tub, two individuals already seated in the tub stared at my scars and were so disgusted or afraid that they cringed and quickly jumped out to avoid the water that I had just contaminated. So my answer to why I am an advocate: it’s SO OTHERS WITH PSORIATIC DISEASE DON’T HAVE TO EVER FEEL THAT HUMILIATING HURT ADDED TO THEIR PHYSICAL PAIN. Educating the patients and the ignorant. Nurturing empathy and not feeding into sympathy. Encouraging action, not isolation.
I guarantee you that someone very close to you has a form of Psoriatic Disease. That’s how prevalent it is especially at this time. Either, they don’t know that they have it yet or they have been misdiagnosed. This disease is debilitating. It is life HALTering (yes, it stops regular life in its tracks). All we are asking for is an opportunity to have the information and options right there at the very beginning of hopefully an immediate diagnosis so that we can stop IT in its tracks. And that is what this ask will give us.
I always use this analogy: When someone you deeply care about finds out that they have cancer, I’m sure that one often says “Oh, so happy that you caught it early!! Now you can start “this type” of treatment and beat it”. We don’t have the ability for early detection, we don’t have a specific roadmap for treatment, we don’t have a one size fits most type of medication because we need more research to be done, we need more funding for our researchers, we need your support, we really need your signature today.
Thank you for taking the time to listen to my one story out of about 8 million of us here in the United States alone which have many stories like this to tell. – Kat Mulingtapang, Capitol Hill Day 2017
I wanted to share this in hopes that it would encourage you to stand up for YOU! Regardless of the platform, know that you have a voice.
* Here is a link to a recap of the 2016 Fly-In day. It gives us a detailed explanation of the congressional asks that we were supporting last year as well as this year NPF Capitol Hill Day
LIVING YOUR FULLEST LIFE 