Happy 6th birthday IFAA!

Written by Tiffany Westrich-Robertson, CEO of IFAA, patient with Rheumatoid Arthritis, Axial Spondyloarthropathy, Sjögren’s Syndrome

6th birthday

Ahh to be six.  We see the world as hopeful, so many things to experience, so many things to try – often with little fear of being hurt or rejected.  We are open to relationships, people like the mail man or the checker at the grocery store are super cool and we get excited when we know we can see them soon.  Our knowledge of science is limited, mostly doing fun problem solving experiments, like how to make the glue in our desks into molding clay.  Oh, and people who are 40 are SOOOOOOO old.

Today, May 7th, 2017, IFAA is six years old.  While we are a nonprofit, we aren’t much different than “being six” as a human.

  • We are hopeful.  We believe strongly that if the world (public, peers, family, doctors, media, policy makers) is properly educated about DIFFERENT TYPES of arthritis that they will see that the second most “common” (word used sarcastically, as many of these are rare diseases) type of arthritis is autoimmune/autoinflammatory – or the arthritis associated with having an autoimmune or autoinflammatory disease, they will understand these diseases require a different type of research, treatment plan, and management protocol.  Doing this will result in earlier detection, referrals, diagnosis, and treatment.  It will help secure funding for treatments that are more personalized to our individual journeys.  It will help to alleviate misunderstandings among family, friends, peers, co-workers, the medical community, and policy makers.  It will make a difference. (Learn how YOU can make a difference this May 19th-21st during World Autoimmune/Autoinflammatory Arthritis Day’s virtual online race between your favorite nonprofits!)
  • We believe in relationships.  IFAA is unique in that no program or effort we take on is by ourselves.  We believe in other nonprofits, advocates, coalitions and the great work they do – and we believe that if we unite our efforts only good things can happen.   This “global network” philosophy that in ingrained in all we do has enabled us to establish solid relationships with dozens of groups all over the world – from the US, Canada, Europe, Australia, New Zealand and counting.  We think they are so cool and we look forward to working with them every chance we get.
  • We are leaders in the patient-researcher partnerships movement.  Other than awareness and education about arthritis differentiation, our other strongest initiative is involving patients ON the research team.  We get to learn about science in new ways, and be part of the solution.

Six years ago today, on my 40th birthday, I opened the mailbox to find the letter that stated IFAA was officially a nonprofit.  Today, at 46, I look back on the last few years and all that IFAA has accomplished in a very short period of time.   But one thing that is different between being a six year old human and a six year old organization is 40 is NOT old.  And 46???  I’ve only just begun.  And the same with IFAA – watch out world, here we come!

What route would you take to my party? Explaining autoimmunity

Written by Tiffany Westrich – Robertson

When I was first diagnosed with Rheumatoid Arthritis (RA), I was perplexed.  I was relatively young, athletic, ate healthy, exercised – I did not understand how this happened to me.  After some research, I learned that these diseases are partly caused by genetics, and that any family history of autoimmune disease of the 80+ possibilities constituted ‘genetic predisposition’.  There are people in my family with autoimmune issues (not RA), so that makes sense.  But autoimmune diseases are also the result of a faulty  acquired immune system, which means they are triggered by a learned, or adapted, response that is generated by something in the environment*.  Examples of some environmental triggers include smoking, infections, gut bacteria, dental decay, and even extreme emotional or physical stress.  But as of now, researchers cannot prove any one environmental trigger as the cause, and they admit some triggers are still unknown.

confusedSo how can patients understand how this happened to them, and more so, how do they explain it to others?


Explaining autoimmunity

Shortly after diagnosis, I heard Dr. John O’Shea, Scientific Director at the National Institute for Arthritis and Musculoskeletal and Skin diseases (NIAMS), give a presentation about autoimmunity.  Much to my surprise, it was not a speech riddled with scientific jargon, but rather an analogy that brilliantly answered the question how does autoimmunity happen.

“What if I invited every person in this room to come to a party at my house next month?” Dr. O’Shea asked.  “How would you get there?  Would you take a plane, a train, a bus, a cab?  Which route would you take?  The highway or the side streets?  Direct route or scenic?”  He gave everyone some time to ponder that answer, then continued by guessing that most of us did not live together, hence our starting points would vary and so would our paths to arrival.  “This is much the same way autoimmunity works,” he added.  The explanation that followed helped me learn an easy way to understand and describe it to others.

Here’s what I took away from the analogy:

Let’s sahouse partyy that everyone reading this post is genetically predisposed to possible autoimmune disease and you are all invited to my house for a party.  Your house is the starting point, which symbolizes your unique genetics – no one else is starting from your house except for you.  The different methods of travel and routes you take to get to the party represent the potential environmental influences – smoking, infections, gut bacteria, dental decay, and even extreme emotional or physical stress, etc.  Even though you all will leave from different places, at certain times some of you will cross paths – or in the case of the analogy, will be exposed to similar environmental triggers. Upon arrival, some of you will develop an autoimmune disease and some of you will not, even though you all were genetically predisposed and some of you, at times, even took similar “environmental routes”.   Additionally, in those who do develop disease, even if it’s the exact same diagnosis, you will still have your own individual genetic + environmental journey and, therefore, will have a slightly unique presentation and treatment response.

wow my reaction





dr oshea lab 800

Dr. John O’Shea giving IFAA a personal tour of his lab.  This will be the subject of a future post. 



His presentation did eventually branch into the relevancy of genetic + environmental onset in research and the challenges associated with finding pathways in populations where outcomes are somewhat individualized.  But advancements in genetic mapping, such as the work being conducted in Dr. O’Shea’s lab, are sure to keep us on the road to the treatments that narrow down solutions.



Future parties

I have a better idea now how I got to the party.  I thank Dr. O’Shea for this great explanation, and additionally for the work he and other researchers are doing to identify the paths most traveled.  Hopefully, in time, the routes to the party will be filled with known roads to avoid, and more and more people will arrive without ever developing an autoimmune disease.


*Note:  Those affected by autoinflammatory diseases, such as Behcet’s Disease and Still’s Disease, can still use this explanation, but with minor adjustments.  Autoinflammatory diseases are a result of a faulty innate immune system, which means that genetic mutations are the primary cause of the immune response, with little environmental influence.  Learn more about the differences between autoimmune and autoinflammatory. 


Environmental Triggers and Autoimmunity, Aristo Vojdani et al.  PMCID: PMC4290643, National Library of Medicine at National Institutes of Health.  2014 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4290643/
Smoking and rheumatoid arthritis: What’s the risk? Chang-Miller, Mayo Clinic. 2014 http://www.mayoclinic.org/diseases-conditions/nicotine-dependence/expert-answers/rheumatoid-arthritis-smoking/faq-20119778
Rheumatoid Arthritis and Gum Disease, Dunkan A. Arthritis Foundation, 2016 http://www.arthritis.org/living-with-arthritis/comorbidities/gum-disease/ra-and-gum-disease.php






Are you ready to be Systemically Connected? Take a seat!

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In the last six years since IFAA has been a nonprofit, we have been “the patients at the table”.  We have been the panelists and keynote speakers, focus group participants as well the moderators, grant reviewers alongside rheumatologists and researchers, and at the offices of policy makers.  We have worked alongside over 5 dozen nonprofits, patient advocates, and advisors from all over the world, and are members of over a dozen coalitions.  We have participated, both in person and remotely, in 100’s of seminars, conferences, webinars, and meetings. 

All of these experiences have built our knowledge and expanded our resources to a level we never imagined possible.  We have continuously been told, “You all are a wealth of knowledge!” so now it’s time we pass it on to the community, so you can benefit from it! So pull up a chair – we are going to connected YOU to all of the knowledge and resources we have collected, and will continue to gather.  Let’s get Systemically Connected!


What makes Systemically Connected Unique?

Systemically Connected will not only turn all of our past, current, and future experiences into articles that will help you gain more information about topics that are important to you, but all discussions (including your comments) that follow each post will be collected and analyzed for research purposes and future project development.

And remember, we are patients too, so these conversations will be 100% patient led.  The patient voice really does matter at IFAA!


What topics are on the table?

Based on our own experiences as patients and our communications with the patient community, we will talk about topics of most interest including:

  • Autoimmunity – How can I explain it to others so they will understand?
  • New Rheumatologist – What can happen?  From new diagnosis to treatment changes and how to prepare for “the change”, it’s a real situation that many of us face.
  • Autoimmune versus Autoinflammatory Diseases – What’s the difference?  Which do I have and why does it matter?
  • Biosimilars – What should I know?
  • Misdiagnosis, Re-diagnosis, Dual Diagnosis – What’s going on?!
  • “Patient-Centered Research” – It’s great the patient is being considered, but what the heck does all of this mean for me?
  • Medical Marijuana – Let’s stir the pot
  • It’s Not Your Grandma’s Arthritis – Enough said

Also, YOU can influence what comes to the table by sending us your topic recommendations via our Contact Us page!