Last weekend I had the pleasure of attending and speaking at the Kansas University’s Vasculitis 1 day conference. I am an education junkie so I LOVE attending these conferences. Even though, I have attended many and have been diagnosed for 11 years, I always end up learning a few new things that can better help me better manage my EGPA/CSS Vasculitis during each and every conference.
Doctors volunteer their time to help arrange these conferences and find all the speakers, calling upon colleagues to share their knowledge. Many patients attend these conference and end up with a whole new team of doctors at their disposal. It’s amazing to sit back and observe the interaction between doctors and patients.
Dr Jason Springer, from Kansas University arranged this conference and his attention to detail and passion to help Vasculitis patients showed in everything at the conference. He was very approachable and patients knew they were with a Doctor that cares greatly about Vasculitis Research and patients with Vasculitis.
Kalen Young, from the V-PPRN gave a very informative talk about the how and why’s of the the VPPRN and even surprised up with a few teaser results of some of the research projects many of us have participated in online. It really brought home the concept that WE, as patients are needed to make a difference in this type of patient centered results.
Dr Tanaz Kermani from UCLA gave a wonderful overview of the medications used in treating Vasculitis and the side effects of those medications. She was able to share a lot of the medication most Vasculitis patients have in common along with highlighting some very disease specific medications. Her excitement for the the new medications that have recently been approved by the FDA and the meds that are in clinical trials raised everyone hopes that Vasculitis patients are finally getting options in medications and there may even be alternatives to prednisone (for some types of Vasculitis) available in the near future. I personally enjoy her talks very much, she is clear and to the point. Her slides are always technical enough for more experienced patients just easy to understand to new patients. Her honesty about the side effects of some of the medications is wonderfully refreshing, she acknowledges the challenges but her quiet and knowledgeable demeanor brings calm and confidence to patients. She is hosting a 1 day conference at UCLA on November 10th, if you are in the area it will be totally worth your time to attend.
Dr Selina Gierer gave a talk I had never heard before at any Vasculitis conference. She gave a talk on the Immune system and the important role that an Immunologist may play on your health care team. I was thrilled that patients were hearing about managing infections and when to seek out further help. She explained the fine line of keeping our immune system suppressed while still allowing it to be strong enough to fight off infections. Conference participants had many questions about vaccinations and she was incredibly knowledgeable and shared what she knew with us about this subject. I hope she speaks at more Vasculitis events in the future.
There were a few breakout sessions and I didn’t get to all of them and I apologize that I will have to leave a few doctors and their talks out of my summary.
The highlight of Dr David Beahm’s talk on Sinonasal manifestations of Vasculitis was watching the VF staff look like they were at a horror movie when he showed a video of a nasal scope. Many of us have had these done and to be honest, we are kind of used to seeing it all. Seeing new people see this type of video for the first time always makes me laugh and remember the days when I had no idea what a nasal scope even was. Sorry VF staff but you guys were funny to watch.
During the lunch break, I had the pleasure of speaking to the audience about Finding a New You after a Vasculitis diagnosis and why your life will never be the same and how that may not be a bad thing. It is a subject I live each and every day and I was able to reflect on my toxic anger about being told I would have to find a new normal. As many of you know, I have found peace within myself and allowed myself to seek out and be open to new opportunities in life but his was a very long and bumpy road. I promised the audience to have my speech posted on this page soon so it can be shared and hopefully help others to allow happiness and peace to return to their lives. I’m still working on the final written version…
Dr Rajib Bhattacharya informed us about Bone Health and he took time to discuss the newest studies about how long we can or should be on certain bone medications. For many the idea of bone medications having a limited effective timeline was a new concept and you could see the conference participants were taking many notes during his talk.
Dr Springer gave the closing comments and left everyone feeling positive about the future of Vasculitis research. I always commend the Vasculitis Foundation and the doctors who run these conferences for giving us the information we need, not sugar coating it. Telling us the good, the bad and the Ugly but always giving us hope and leaving us with the belief that we are not alone in our individual fights against Vasculitis.
Here’s a list of the upcoming conferences:
— UCLA: November 10, 2018
— Seattle: January 12, 2019
Posted in Uncategorized by karen in wonderland with .