Due to the intensity of this day and my lack of wi-fi for the next week I will be publishing Day 3 and my end thoughts in sections. Please be patient, it will be worth the wait.
The A-team of Vasculitis information and knowledge was present on the third and final day of the Vasculitis Foundation’s (VF) 2015 Symposium in Jacksonville Florida. I was very tired by day 3 and it was hard to stay focused on so much great information that was being shared.
The morning started with The Vasculitis Foundation’s annual meeting. There was a surprise announcement that 2 NEW studies have been funded by the VF in the area of CSS. These studies were funded though a donation from Ben and Cathy Johnson. WOW…. This is incredible news for CSS patients around the globe. I do not want to give out mis-information so when I get the specifics of each of the studies I will post them (soon… very soon).
We were also given the financial statement of the VF and news about programs, grants and fellowships that they are working on. I could appreciate when the speaker said we are not ‘rare’ we are ‘extraordinary’. If people think something is rare, they think it will not happen to them or someone they love. The word extraordinary gives one a much different feeling.
The digital age is being welcomed by the VF. There are over 4,000 members in the Facebook group and over 30,000 view of the u-tube Vasculitis awareness videos. Ed Becker has worked very hard on all these videos and was there filming many, many more for future release. I even did one….. and the camera lens did not shatter (surprising).
Something VERY important to note here. Just because you belong to the VF Facebook page does not mean you belong to the VF as a member. As a member, your $35 a year is helping to fund research in the field of Vasculitis. You are also part of raising awareness. If you are interested in joining the VF, the membership application can be found here.
The first talk of the morning was titles Research As A Form Of Patient Care by Peter A. Grayson, MD. His talk was fasinating and I had trouble taking notes due to the profound interest I had in his slides and his research. I will start with the the most important part. They are actively looking for people with Large Vessel Vasculitis to come to the National Institute of Health in ______ for imaging test studies. So IF you have large vessel vasculitis contact the NIH and please participant in their study. It could help you and patients in the future. He went into the fact that there are so many ‘opportunities’ in research in Vasculitis. He sees the greatest opportunities in:
– unclassified vasculitis
-treatment of refractory disease
– unusual features and presentations of vasculitis
He sees every case that does not fit into the ‘normal’ vasculitis box as an opportunity to learn more. He enthusiasm was contagious. He presented a case study of a family that ended up not being vasculitis in the end, but he was thrilled at being able to classify things as vasculitis or just being able to find out what it may be if it wasn’t vasculitis. He spoke about “NETs”. Neutrophil extracellular traps (NETs) are networks of extracellular fibers, primarily composed of DNA from neutrophils, which bind pathogens. If you have never heard or read about NETs now might be a good time to blow your brain and read about them. They are fascinating and the imaging is amazing. Here’s even a cool u-tube video about them.
Talk #2 of the morning was by the amazing (in my humble opinion) Ronald Falk, MD. His talk was entitled, ‘Understanding Vasculitis: A View From 30,000 Feet : Where We Are, Where We’re Headed’
I initially did not understand the title but as he explained the meaning behind the title it made sense. Dr Falk compared having vasculitis to the views of the Grand Canyon. You may be, at times on the ground… unable to see around the next rock formation and no end in sight and you look up and can’t figure out how you will ever get out of it. Or you could be sitting on the edge of the canyon, looking down. seeing small sections and seeing the way to go forward but not seeing the whole thing. The 30,000 feet view is way about, you see it all laid out before you but you are so far away that you can’t see the tiny details like the person on the ground.
As a patient we are usually at the bottom of the canyon unable to see the clear pathway and only seeing more obstacles in our way to better health. The doctors tend to be at the rim, looking down. They see the pathway, but not the whole picture, they can;t see the ‘little things’ we are encountering. The researchers are at 30,000 feet — they may see the whole picture but sometimes lack the details.
Dr Falk gave a fascinating talk about the discovery of Humoral Immunity by Ehrlich who was a pioneer in this field in the 1800’s. He showed a great see-saw image of how we need our antibodies to be in balance with the regulatory cells. What we want is balance and what we lack as Vasculitis patients is such Balance. When we have balance, we can be considered to be in remission. He sis a fantastic job of describing what’s going on and what the ‘break down’ is in our bodies. Antigens… Antibodies…. lots of great slides and info but way too much to take notes on (once again should be released soon by the VF for all to see).
Dr Falk went on to explain that “we all have 50 different type of immune cells and we are just beginning to understand some of them”. He also emphasized that ” If you get stressed, you get worse”. How wonderful to really hear it from a doctor that stress is such an important player in our Vasculitis flares. He also talked about the C5A receptor blocker being studied as it worked on mice for ANCA associated Vasculitis but human trials have not begun.
He stated, “We need to learn how to use the drugs we have better or create a device to assist patients”. Emphasis was placed on the fact that the drugs we have are so good that we are over suppressing patients and infections are a real possibility. They are studying what is the lowest effect dosage of medications and how to test that so patients have the lowest possible chances of infections.
The most common question from patients seems to be, ” When should I stop immnosuppressent therapy?” In order to answer this questions doctors have to figure out what will prevent your disease from coming back or becoming active again. 1/4 of the vasculitis community reach long term remission. He would love to find a biomarker so the doctors could predict when you are in remission and when you are going to flare.
IS THERE A CURE?
Well, sad to say no cure at this time but the research is heading toward the idea of restoration of health and well being for the patients and that is why patient powered research is so important (see day 2 post to find out more about becoming part in patient powered research). Dr Falk stated that 81% of people with Vasculitis admit to using some sort of complementary health practice to help them feel better and restore their health. He states, ” Whatever you do that makes you feel like it restores your health…. Do It!” Just don’t go to extremes and share with your doctors what you are doing.
The most exciting part I thought was when he stated…. Yes, boys and girls and respected medical doctor and researcher stated that, WE as patients, tend to know when we are going to relapse (flare) before the tests know. We should trust our instincts and our experience. I don’t know about you, but to have a doctor admit that we know before the tests show is AMAZING to me. I have always known, I have little feelings, and little things start to happen but usually I wait too late for the tests to show and I end up in a huge flare. Now I know to be more proactive and stand my ground when I know a flare in on the horizon even if my lab tests show otherwise.
His last thought was ” Merging of science and patient voice will get us where we want to go…”
That is where I am going to leave you my friends and followers. Think about that last statement. Decide how you can assist and help out so patient and doctors can merge as one in our treatment.
My next installment will be out in a few days and I will go over the last 2 speakers of the day and my closing thoughts. Be well, and remember knowledge is power and maybe it’s time to take the lead in your Vasculitis health to more forward.
Posted in Uncategorized by karen in wonderland with 1 comment.