Sunday, November 10, 2013

A Letter from The International Foundation for Autoimmune Arthritis's CEO

The aftermath of my travels to the NIAMS Coalition. Please share to help everyone understand the realities of autoimmune arthritis diseases.


(Tiffany) As CEO of IFAA, and autoimmune arthritis patient, I understand these diseases and the toll they can take on the body. If you view a photo posted of me yesterday morning, right on this page, I'm smiling, happy, and looking "normal". I'm speaking with the Director of NIAMS- the arthritis division of the National Institutes of Health. A highlight, an honor, a moment I will always cherish not only due to the outstanding work performed by Dr. Katz, but because I'm humbled as a patient to have shaken the hand of a man who works day and night to better my life and those in our community.

Now the reality of how much I truly know about these diseases- how much I understand. I am you, you are me. I flew from Los Angeles to D.C. on Tuesday, prepared for the trip and potential flare for days prior, working from the sofa and resting as much as possible. I knew Wednesday would be a 13 hour day, filled with back to back meetings, in a different time zone, jetlagged and sore from travel. As the day winded down the fatigue was so powerful I sat alone in the restaurant barely able to put fork to mouth, yet still the blur of the days triumphs keep an internal smile inside me that kept til morning.

I took a long bath before bed, preparing for the long flight home in the morning, hoping my body wouldn't freeze in response to the extreme use the day prior. I anticipated a fever, fatigue, and general flu-like feelings, so I planned my outfit for travel accordingly, buttonless/zip-free pants with a pull over top and walking shoes that could be easily, yet discreetly, slipped off under the plane seat in front of me. I then traveled across country home, just 2 days after the original departure, and basked in the outstanding memories of the science heroes I had the honor to meet. I smiled at the thoughts of the CEO's and other advocates I sat next to, shared conversations with, and will continue to walk side by side together in our fight for the community. Then as I made my way back to my home and relaxed on the sofa, I realized all the preparation I planned to ensure a minimum flare was simply not enough. Within hours of landing, here I sit- or barely sit- with an outbreak of shingles that are placed such it makes it difficult to sit or lay comfortably. They will certainly trigger a full flare, joints-tissues-and flu like symptoms, and I may be laid up for a bit. But I want you to know it was all worth it. Every moment of the fatigue, every minute of pre-travel prep, and now every moment of discomfort. It's worth it, because I met scientists who listened, I talked with leaders who want to unite for change, and I was invited to sit side by side the scientists and doctors at the NIH to become the 2nd patient ever to help NIAMS review their grant applications in 2014.

I could have posted more pics of me, smiling and cheering for this step towards victory. But as a patient myself, and the leader of this nonprofit, I choose to tell the truth. To let the world know that every single second of my trip was worth the journey. But that journey comes with a price. We may look 'normal' on the outside but when we push, even if we plan accordingly, our bodies' will respond with a vengeance.

I'm not posting this to complain or for sympathy. I am not looking for 'fans' or for praise. I am posting this to show that I am a real patient with real consequences for pushing my limits and doing my job. But this is the role I chose- the role of an advocate. I, and the rest of those with IFAA who also are patients, will continue to sacrifice as needed to ensure our community is heard and changes to research are made.

Did I get shingles and flare due to the trip? Yes. But I shook the hand of the director of NIAMS and sat next to some of the most amazing community heroes...and I'll do it again and again.

IFAA is the first and only nonprofit that focuses solely on clustering together these few diseases in order to solve the equation:
Early Detection=Early Referral=Early Diagnosis=Early Treatment=Earlier Possibility for Remission

We are changing the world the best we can. Every limping, flaring, and blistering step at a time.




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6 comments:

  1. You know something, I never thought of it, but I have Spondyloarthritis and I recently had a shingles outbreak. It was during a high-stress time. Is that common with autoimmune arthritis patients?

    Carmen
    www.thetriplebs.com

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    1. Hi Carmen, I'm sorry to hear you had to deal with a Shingles outbreak. Yes, it is common with Autoimmune Arthritis patients. Stress is a major contributor to an outbreak, but our compromised immune system is the root of the problem. Here is a link for you to read. http://www.mayoclinic.org/shingles/causes.html
      I hope you don't have to deal with it too often, I know it's not a comfortable thing to have. I also hope you're having more good days than bad with your Spondyloarthritis.

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    2. Thank you, Lorna. I will check that link out. My wrists and hands have been giving me a hard time for the last month, but I have three young boys, so I don't have a choice but to keep going. Thankfully, it isn't my back right now. That's worse, lol.

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    3. Oh good lord, I have 3 grandsons who after just a few hours wipe me out these days. I remember getting through the days way back when, now it's just a blur, I was like you I had to keep going. I hope you have a lot of support around you. Thank goodness for school days and bedtime right :) I find heat helps my back, and paraffin wax helps my hands and wrists too. I hope you get some relief. Drop me a line if you ever need to or have the time to talk.

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  2. Plz someone help me out... I am 22 years old girl having ost.arthritis... My doctr has recommended me steroids..due to which i am gaining weight so fast... I am having svere pain these days but don't have any proper guideline... M getting into depression now...plz help me out of this...i really need someone who guides me personally... I'll be very thankful

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    1. Hi Sam, I'm so sorry you are having severe pain. You should talk to your doctor again if your current medication is not helping you. I know the pain of Osteoarthritis is terrible as well. I would suggest you see him or her again for a follow up and get checked out further there may be more going on with you. If your doctor is not willing to work with you, you are always entitled to a second opinion. I understand your being depressed as well, it is hard not to be when you are so young and in pain. My best advice is to see your doctor again, there is also a link at the top of my page with resources to sites dealing with Autoimmune Arthritis. You can also contact me through e-mail it is up top as well if you need someone to talk to, I can't give you medical advice, I can listen though if you need an ear :)

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