Jacksonville Vasculitis Symposium — through my eyes — day 1

Hey Dorthy, We’re not in drought ridden California anymore! Ok, probably just me but I am loving taking a break right now and just listening to the thunderstorm and seeing the lightening.   It’s a nice chance and a peaceful way to spend the next hour till dinner with other members with CSS group tonight.

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Vasculitis buttons for all types — great for finding ‘your tribe’ Not good for playing poker 🙂

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VF brochures on every type of Vasculitis

Today was exhausting and enlightening. First let me say that getting involved has really made these conferences more entertaining. It has given me a way to connect with more people and hear more stories.

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Sunrise and New Hope for Vasculitis patients in Jacksonville, Florida

The Opening speaker of the conference did a presentation on being a proactive patient. It was very informative and basically was reminding us that WE are the heads of our teams and as such it is important to keep good records, educate ourselves and take control of our Vasculitis.

One of the opening statements by a Vasculitis Foundation Board member said it best, “ you are to be congratulated because you took control of your Vasculitis by coming to this symposium”.   I guess jumping out of my seat and cheering at that moment would have been appropriate but if I could have high-five that man I would have.

 

The biggest question is WHY should I show up to one of these conferences when most of the slides and presentations show up on the internet and u-tube within 6 months?

Good question and here is my take-away.

#1 – Many of the slides and information shared by the speakers is cutting edge’ and has 2417904339_26ce05c4bdnot even been submitted into medical journals yet. For this reason no video, recordings, or pictures of their slides may be taken. So, coming is the one of the only ways to be ahead of the research curve.

#2 – You get more by the inflection of the speaker, their body language, their unique sense of humor then you ever would by just reading the notes and see a slide of the presentation. Everyone may be listening for something different so coming is the only way to really make sure you hear (or you ask the speakers your questions) what is important to you.

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T-shirt table

#3 NETWORK, NETWORK, NETWORK – Wait should I say that again? I had the pleasure of working the T-shirt station and upon handing someone their t-shirt and they saw my button stating I had CSS/EPGA they burst out crying and nearly jumped the table to hug me. Weird… a little but I so get it. I was the very first person in 4 years that they have ever met that had CSS. They finally felt like they belonged and weren’t so alone. These multiple day conferences really give you a chance to seek out others with your type of Vasculitis and carry on meaningful conversations with them.   In my opinion this provides so much to Mental Well Being which translates to Physical Well Being in the future.

There are so many intangible things you get from attending a conference and staying in a strange city where you have more time to meet and socialize. It is informative and enlightening in so many ways.   Am I a conference pusher? YES… but it is because I know because of the Vasculitis Foundation Conferences I have a different outlook on my CSS/EPGA and life.   I look around and know I am not alone, I know all things are possible, maybe not in a straight line but in a round about way we have the power to be happy and get through these things. Also I always feel HOPEFUL by the end.   I know I can go on, I get new ideas, new tricks , new tips… may be as simple as realizing no, your rheumatologist can’t OK that medication through your insurance but your allergy doctor can (light bulb moment!).   I always walk away with something new that makes the trips worth it.

I am not going to do the in depth notes of the conference like I did previously but instead I will give you a few insights from the sessions that I went to and hope that other attendees will do the same.

During the break out session for CSS/EPGA by Dr Andy Abril chair of Rheumatology at

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Dr Andy Abril, Mayo Clinic, Jacksonville

the Mayo Clinic in Jacksonville was our speaker.   He that depending on the specialty, CSS may categorize it differently.    Rheumatologists consider it to be an ANCA associated Vasculitis.   Hematologists will put it under the heading of  Hypereosinophilia.  While Pulmonary doctors may categorize it as Eosinophilic Lung Disorder.   Same illness three categories.  We are truly a hybrid is what it gets down too.  (makes you wonder if that is why it is so hard to treat and we can present so differently).  The consensus is 2.4 – 4 per million worldwide have this chronic ailment.  Usually (notice the word usually) it affects people 14-75 years old (interestingly they are seeing more younger patients than in the past).

Once again…  You can be ANCA positive or ANCA negative and still have CSS/EPGA.  There is ongoing discussions about weather there are two different illnesses (positive vs negative) but no conclusive evidence yet except that they see similarities in presentation if you are of one type or the other (but then…  there are many cross-overs hence the Lots more research needs to be done).

We may all be very familiar with the criteria for CSS/EPGA:

  • Asthma (wheezing, expiratory rhonchi)
  • Eosinophilia of more than 10% in peripheral blood
  • Paranasal sinusitis
  • Pulmonary infiltrates (may be transient)
  • Extra-vascular eosinophils
  • Mononeuritis multiplex or polyneuropathy

You need 4 of the six but the deciding factors for most doctors is they also like to have PROOF (yes he emphasized this) of  proof of vasculitis.   This Vasculitis proof can be anywhere in the body but without this proof CSS/EPGA is ‘suspect’ but may not be a confirmed diagnosis.

He also stated the if a patient has Asthma + rhinitis or sinusitis + high EOS + proof of eosinoVasculitis than a CSS/EGPA diagnosis is 99% specific.   He once again emphasized that documentation of Vasculitis with some sort of Pathological finding is essential.

So those were my take-aways from today.   The conference concluded at 4:30 and then the other FUN began.

22 patients and caregivers with Vasculitis took a short walk to an Irish Pub at Jacksonville Landing for a no host dinner. IMG_3667

It was GREAT!  Everyone seemed to become instant friends.  The conference was discussed.  CSS was discussed.  Family, friends, where we lived…   everything was discussed.   I think we were by far a very talkative group and everyone seemed to walk out of the pub very happy with at least 1-2 new found friends (we even adopted an Bechet’s patient).  I apologize because I was in the moment and took No pictures (yes, I am bad….) but being in the moment is so much more important at times.

I have to say the CSS group seemed to mesh very well together and we all seem to be a happy and lively group.  We know that alone we stand but as group we can make things happen and push for more CSS/EPGA research.

Time to go rest because tomorrow starts very early for this girl that is still having time zone change difficulties (ordering room service at 9:30pm because to me that is dinner time in California).

I hope other attendees will post their take away thoughts too.  We all see things and hear things through different glasses so it’s great to hear what others learned.

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More tomorrow….

See Jacksonville or Bust – pre-conference thoughts

See Other Karen in Wonderland Blog Posts

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See more info about CSS /EPGA

 

 

 

 

 

 

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3 Responses to Jacksonville Vasculitis Symposium — through my eyes — day 1

  1. Betsy Rizzuto says:

    This is our first conference, our daughter is 12 she was diagnosed with Wegener’s/GPA last year. We loved the feeling of no longer being alone I would have loved for her to meet someone near to her age.

  2. Pingback: Day 2 - Vasculitis Foundation Conference 2015 in Jacksonville Florida - Karen in WonderlandKaren in Wonderland

  3. karen in wonderland says:

    I know there are more kids out there and I think it would be amazing if someone volunteered to assist the VF in doing more on the ‘young adults’ track for the next conference. List this information on your evaluation and maybe you can help rach out to the ‘younger set’ and their parents to attend the next conference by helping to organize other activities for them in addition to the all the speakers. Maybe more outings? I know this year there was a meet-up and a dinner planned but the more that is planned and published the more we could encourage our youngest members and their parents to attend.

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