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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Wednesday, November 6, 2013

News from The American College of Rheumatology 2013 Meeting

Today, I would like to share an exciting survey with you that was presented at the annual by CreakyJoints and Janssen at the American College of Rheumatology's annual meeting.

CreakyJoints is an Arthritis Support Community for people living with RA, OsteoArthritis, Rheumatic Diseases as well as their caregivers. 

As a leader in Immunology, Janssen is committed to the Rheumatology community focusing on providing therapeutic options and support to patients living with Chronic Rheumatic conditions.

Highlights of the survey shows how important communication with your Rheumatologist is,
It also shows that patients are open to more than one type of therapy. I will provide the info-graphic and the full release below.

 Here is a link to a brief video presentation from Creaky Joints Co-Founder Seth Ginsberg:

I hope you will find it as interesting as I do, it shows we are heading in the right direction and I hope you will share it.


More Patients Expressed a Preference for Infusion Modes of Administration than Rheumatologists Believed

SAN DIEGO, October 28, 2013 – Data presented by Janssen Scientific Affairs, LLC, in collaboration with the patient advocacy organization CreakyJoints, reveal that more than half of surveyed patients with rheumatoid arthritis (RA) were open to both subcutaneous (SQ) and intravenous (IV) biologic therapy, and that more patients preferred IV biologic therapy given by a healthcare professional than surveyed rheumatologists believed. The data are being presented at the 2013 Annual Meeting of the American College of Rheumatology (ACR).

Approximately 1.3 million people in the United States are living with RA,[i] a chronic, systemic inflammatory condition that is often characterized by symptoms that include pain, stiffness and inflammation, and in some cases, joint destruction and disability.[ii] Current guidelines for the treatment of RA recommend that patients who are not adequately responding to treatment with disease-modifying antirheumatic drugs (DMARDs), most often methotrexate, initiate treatment with biologic therapy, a genetically engineered medication that can interfere with inflammatory substances in the body.[iii] Biologics are administered either by subcutaneous injection, by a healthcare professional or the patient, or by intravenous infusion at a hospital or certified infusion center.[iv] 

“The results of this study emphasize the importance of effective communication between patients and providers. Patients should be open with their rheumatologist about their disease and treatment to ensure they are actively contributing to their treatment plan,” said Seth Ginsberg, co-founder and president of CreakyJoints.

The purpose of the study was to explore openness to and preference for IV and SQ formulations of biologic therapy among adult patients diagnosed with RA and currently treated by a rheumatologist with DMARDs prior to biologic initiation from the perspectives of both patients and prescribers. A total of 243 patients were recruited through CreakyJoints (n=101) and a consumer panel (n=142), while 103 prescribers were recruited through a physician panel to compare patient perspectives to rheumatologists’ perspectives. The study found that overall, 53 percent of surveyed patients with RA were open to both SQ administered at home and IV biologic therapy administered by a healthcare professional if suggested by their rheumatologist; whereas prescribers believed only 41 percent of patients were open to considering both forms of biologic therapy. Among all surveyed patients, 16 percent were open only to SQ, 14 percent were open only to IV and 16 percent were open to neither. However, surveyed prescribers believed that 34 percent were open only to SQ, 13 percent were open only to IV and 12 percent were open to neither. When asked about preference for SQ vs. IV administration overall, 28 percent of patients reported that they prefer IV therapy given by a healthcare professional, while prescribers believed only 16 percent of patients prefer IV. Twenty two percent of patients reported no preference, while 49 percent preferred SQ self-injection given at home. Prescribers believed that 31 percent of patients had no preference, and that 52 percent preferred SQ. Patient openness to and preference for SQ versus IV administration was further influenced by frequency of administration, time to complete an infusion and site of care.

“These data show that rheumatologists are well positioned to guide the shared decision making process with patients to ensure that patients are provided with information about all appropriate biologic therapy options with different routes of administration, and that patient preferences are considered,” said Susan Bolge, Ph.D., Director of Health Economics & Outcomes Research at Janssen Scientific Affairs.

About the Study
Data were collected online from both patients and prescribers through self-administered questionnaires. Patients were U.S. adults (aged ≥18), diagnosed with RA, currently treated by a rheumatologist with disease-modifying antirheumatic drugs (DMARDs), and with no history of biologic use but had discussed biologics with their physician. Prescribers were board-certified rheumatologists, practicing for 2-25 years, spent ≥50% of their time in a clinical setting seeing ≥50 RA patients per month, and were not government employees or employed by or consultants to pharmaceutical companies. A total of 243 patients were recruited through the patient advocacy organization CreakyJoints (n=101) and a consumer panel (n=142); 103 prescribers were recruited through a physician panel. 

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Saturday, November 2, 2013

IFAA Designer Awareness Bracelet Sale, Don't miss out!

If you've been reading my blog for a while you know I'm an active volunteer for The International Foundation for Autoimmune Arthritis or IFAA/IAAM. What you may or may not know is IFAA started out as "The Buckle me up Movement," in IFAA founder Tiffany Westrich-Robertson's own living room. Tiffany used one of her many talents to create an awareness bracelet for Autoimmune Arthritis, she wore the bracelet to an Arthritis walk, someone saw the bracelet and shared it on their blog. Since that day the movement to create awareness took off. What started out in Tiffany's living room from frustration due to the lack of people understanding Autoimmune Arthritis, it has blossomed into a full blown foundation.  IFAA's mission is early detection, resulting in early referrals, which leads to early treatment, which equals a chance to achieve remission.

All of the jewelry Tiffany creates is unique, and comfortable! Here are a few pictures of mine. 

The Original Bracelet

All of my Amazing Jewelry!

I am proud to be a volunteer with IFAA, we all live with the difficulties Autoimmune Arthritis brings, together our organization runs 24 hours a day.  When one person is having a bad flare there is another volunteer to step in and take over from another part of the world. 

You may have noticed I haven't posted much recently. I have been having more issues with my eyes due to Sjogren's Syndrome. My vision has become more blurry and looking at a computer screen is increasingly difficult. Winter in Minnesota has barely begun and I am feeling the effects of the dry eyes, dry skin and I am having nose bleeds. 

My hands and feet are turning that wonderful shade of purple which means Raynauds has reared its ugly head. How many days until summer?  I am also finding it harder to type as the joints in my hands hurt, they are swollen and sore most of the time due to a continuos flare. My last doctors visit confirmed what I suspected, I need surgery on at least one of my feet. The conversation went something  like this, "You can wear bigger shoes, or have surgery." I chose until as least after the holidays to wear bigger shoes, actually I said I will wear clown shoes if I need to! There are too many things going on right now I don't have time to have surgery.  This is the reality of Autoimmune Arthritis. I continue to work with my doctor to find the right combination of medication, I continue to get up and battle these diseases everyday as I have for 26 years. One day I hope because of IFAA someone won't have to fight so hard for so long.

Thanks for your continued support I truly appreciate it and although I don't comment as much these days I do read your blogs and look at your pictures.

One last thing, if any of you with Autoimmune Arthritis would like to write for the official blog of IFAA Systemically Connected please send me an email at

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