Erin & Jaci
FYGMDNP travels again….
Updated: Nov 9, 2018
This past week I traveled for the first time to the great city of Louisville, KY to attend and speak at The Myositis Association (TMA) Annual Patient Conference, in regards to diet and supplementation for inflammatory disorders. This is their 25th year of providing this amazing conference to patients and caregivers of patients who are battling Myositis diseases.
Now, you might be asking: Exactly what is Myositis? Myositis, by definition, is “a rare disease, affecting approximately 50,000 Americans. Myositis is a general term meaning inflammation of the muscles, which can be temporary or chronic.” (1). There are different subgroups of myositis diseases including Inclusion-body myositis (IBM), Polymyositis (PM), Dermatomyositis (DM), Juvenile Myositis (JM), Orbital Myositis (OM), and Necrotizing Myopathy.
At these annual conferences, TMA provides patients and caregivers with information and education about their particular disease process, provides a platform for them to ask questions on the different topics, and gives them the opportunity to listen to the great, pioneering minds in Myositis. So, to be asked to speak at this conference is definitely an honor for me- especially about a topic that myself and Erin are so passionate about.
I became involved with TMA back in 2012 when my best friend and her sister-in-law co-founded the Team Tommy Foundation, after the unexpected passing of my best friend’s older brother, Tommy. Tommy Worthington was a Sheriff’s deputy who, at the young age of 39, was diagnosed with Dermatomyositis (2). While he was receiving treatment at the University of Miami, Tommy received such an outpouring of love and support from family and friends, that his “crew” was affectionately known as “Team Tommy.” Tommy was determined to start a foundation to help and assist patients affected by myositis disease with medical costs and treatment, along with providing support in research and awareness, when he was able to be released from the hospital. Unfortunately, only 6 weeks after his diagnosis, Tommy passed away from Interstitial Lung Disease, a known complication for his particular genetic autoantibody, MDA5. In Tommy’s honor, Laurie (my best friend) and her sister-in-law, Tommy’s wife Dana, co-founded the Team Tommy Foundation. I was proudly one of the founding board members and, even though I resigned back in 2016, I continue to give my support in any way to Team Tommy and TMA.
If you follow us on Instagram you might have seen me tag and mention @teamtommyfl in our instastories. I strongly encourage you to follow them on social media and visit their website www.teamtommy.org to educate yourself about Myositis and learn how you can contribute to the foundation’s mission.
My topic this year at the conference was titled: “Anti-inflammatory Diet and Supplementation for Inflammation.” To say that the amount of information I wanted to share was immense is a complete understatement, but I was able to condense it to a 45 minute session (trust me…I hit the 45 minutes!). Luckily I had to time for Q & A from patients and caregivers. I spoke about what an anti-inflammatory diet is, discussed potential dietary triggers/inflammatory influences, reviewed supplement options, and touched on the importance of gut health (obviously!) in auto-immunity. The response to my presentation from the patients and caregivers seemed to be positive and they presented me with some excellent, well-thought out questions.
With all of this being said, this week’s blog post is a little different. I wanted to send my presentation out to all of our followers as both an educational tool and a resource be able to share with others. All of the information provided is evidence-based, but, as always, I encourage you to discuss it with your healthcare provider(s) prior to implementing any of the recommendations introduced in the presentation.
I hope that you enjoy it and, as always, if you have any questions in regards to this or any of our previous blog posts, don’t hesitate to contact us via social media (instagram, facebook, and twitter) or email firstname.lastname@example.org.
I hope you guys have an amazing week and remember to always #FollowYourGut,
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