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UCLA Vasculitis Patient Conference
UCLA Medical Center, Santa Monica
October 18, 2014
Part 3 and end review
Disclaimer: This is strictly what I took away from the conference. These are not direct quotes unless in “quotation marks”. I may have taken away something different from other attendees since my focus was on CSS and I have 8 years of experience living with this chronic autoimmune illness. Also realize my dry sarcasm may shine through at times Also remember this is my review of the conference…. Not a transcription of it.
Wow, you have made it to the 3rd part of my conference notes. Congratulations because you are taking time to educate yourself about Vasculitis. Give yourself a pat on the back.
Talk 6 – What’s ahead? How advances in genetics, therapeutics, and patient participation will shape the future care of patients with Vasculitis by Dr Tanaz A. Kermani (UCLA)
Last talk of the day, and I was extremely tired by now but was sad that it was ending. I was loved all the information so far and somehow was yearning for more. My notes for this last talk are a little scattered.
- Biomarkers – multicenter gene studies are happening right now to see and isolate if a gene is associated with Vasculitis.
- Looking for what genes
- Looking for how gene can get activated. Can environmental factors activate those gene(s).
- Further investigations into the role of T-cells, B-cells, Cytokines
We need better diagnosis criteria.
- In small vessel Vasculitis it is very hard to see the activity but we can see the damage it leaves behind.
- How can we detect inflammation? We need better lab tests. Something beyond CRP and ESR.
Are there Biomarkers that we can use to distinguish active Vasculitis verses damage?
Fatigue comes up over and over again with patients. We need a better way to measure it.
Some medications work on some Vasculitis patients while on others the medications may not work. We don’t know why? More investigation is needed so we can better target treatments for patients.
Dr Kermani went on to explain and show some measurement scales used by doctors or patients that are used in Rheumatology and how they are working on creating an international common one. She also thanked the Vasculitis Foundation for sponsoring the conference and encouraged us all to participate in clinical trials and data gathering so we can better understand Vasculitis and help out future patients.
Measurement Scales, clinical trials, and information gathering
- Vasculitis Foundation
- Vasculitis Clinical Research Consortium (VCRC) is an integrated group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research in different forms of vasculitis and improving the care of patients with vasculitis.
- PROMIS — PROMIS® stands for Patient Reported Outcomes Measurement Information System, which is a system of highly reliable, precise measures of patient–reported health status for physical, mental, and social well–being.
- BVAC – Birmingham Vasculitis Activity Score(patient evaluation)
- Online calculator found at http://www.epsnetwork.co.uk/BVAS/bvas_flow.html
- Sites with link to printable form and more information http://www.ancaassociatedvasculitis.com/patient-presentation/damage-activity-indices
- SF-36 for Vasculitis measures functional health and well-being from the patient’s point of view (you can search online to find out more about it and how it is used)
- OMERACT – (Outcome Measures in Rheumatology) is an independent initiative of international health professionals interested in outcome measures in rheumatology.
- ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.
My ending thoughts and conference review
The following totally my opinion not something stated at the UCLA conference
First thing we think about after a trip to a conference is was it worth it? I’d have to answer YES to that question.
- I did learn and was able to pass it on to others.
- I networked with other patients and some of the doctors who presented
- I had a wonderful day in Santa Monica which ended with a drive along the beach on the way back to the airport(doesn’t that make everything worth it?).
I am a knowledge junkie and I realize the more I know about CSS Vasculitis and the effects of medications the better I can live my life to the fullest. All the doctors at the conference were open and encouraging to us about our quest for knowledge and better understanding. They answered all questions no matter how personal or off topic they were. They were as delighted to have us attend as we were to be there. That is refreshing and calming to me.
I took away with me that although we don’t have the answers we are getting better at finding combinations of medications that work for patients. The medical profession is getting better at using the proper diagnostic tools for Vasculitis but it is not a prefect science.
We, as patients, need to be our best advocates. We need to be informed and need to inform our medical care teams of new advances that they may have missed. We need to find out what our doctors are testing for and why? We should get copies of our test results. We as patients need to be educated about the blood tests, diagnostic scans, medications and courses of treatment. We have extremely rare diseases and if we don’t educate ourselves how we expect a good outcome?
I encourage ALL Vasculitis patients to attend a VF conference (when the time, means and your health allows) to better understand your illness and network with other patients and the BEST Vasculitis doctors and researchers available. If we don’t support Vasculitis research and education then can we expect others to?
I already have my plane ticket, hotel, and registration to the
I look forward to meeting you all then.
(CSS officially dx 2007)
Aka Karen in Wonderland
Facebook Blog : https://www.facebook.com/kareninwonderland