PAN / Vasculitis ChatParticipants:
Dick Burns: VF Support Coordinator
Christy: Int'l Chapter Leader VF
Deanna: PAN patient, Texas
Key Terms / Topics:
MPA / How many international VF chapters? / How many U.S. chapters? / Any cost to participating? / What happens in a typical VF meeting? / How do I start a new VF chapter? / When are meetings typically held? / Pain Management
Dick Burns: I have been a WG patient now for 15 years since 1991: I live in Maine and Florida
Deanna: I have been diagnosed with PAN and MPA. I am currently in a pretty good flare. I had been in remission for over 2 yrs. This last Aug. I flared
********** at 8:27 PM Dr. Eric joined the room
Dick Burns: What drugs have they got you on...
Deanna: Right now I am taking H/P meds, diuretics, anti-depressant
Dick Burns: Ouch Dee that is no fun
Deanna: The fatigue weakness and pain are much more intense this time around
********** at 8:30 PM Christy joined the room
Deanna: don't know if it's because I was in remission so long and have forgotten how to manage the disease
Dick Burns: That is what support is all about
Deanna: Dr. Eric, I have stopped all chemo meds. Body too sick, too hard on me. We don't know where to go from here...hmmm
Dr. Eric: Dee, are you still taking prednisone?
Deanna: But, I actually feel better being off meds and getting all the infections cleared up. We are going to keep a close eye on my kidney function. Hopefully it'll maintain
********** at 8:36 PM Bruce (guest) joined the room
Ed_Moderator: Let’s have a round of introductions. Please introduce yourselves----Ed, Moderator
Dick Burns: Dick Burns FV Chapters US
Dr. Eric: Eric Hoy, Immunologist, not a patient
Christy: Christy, Int'l Chapter Leader, Vasculitis Foundation (also head the No. California chapter)
Christy: I began heading the N. California chapter in '03 and was asked to join the VF board 15 months ago.... I am a Weg patient for 15 + years and currently am on the board of VF Live in Maine and Fl Christy: As the Int'l chapter leader, I act as the liaison between Kansas City (VF HQ in US and our Int'l chapters around the world.)
Christy: Off the top of my head, we probably have 12+ int'l chapters...
Ed_Moderator: Dick, Tell us what the VF Support Groups do. What is their purpose. How many in U.S.?
Dick Burns: The main job is to provide support and an understanding person to relate to in your area. Second we maintain a base of DR's in each area We are doing two things. First provide information to the existing Groups on the VF's not just WG.Dick Burns: Second we would like to have chapter leadership from different groups
Ed_Moderator: Dick, how many chapters in the U.S.?
Christy: Cindy, as the Northern Calif. chapter leader....(sorry to butt in...) I'd say that in my group we are focusing on topics relevant to all vascultis patients. Not just WG patients.Christy: Our challenge is finding and inviting other vascultis groups to attend our meetings.
Dick Burns: One of the most important subjects currently is the side effects of meds that we all us as VF patients
Ed_Moderator: Dick, can anyone join the support group? You don't have to be a member of the Vasculitis Foundation, right?#
Dick Burns: All are welcome to join a support group we do encourage VF membership to gain access to the resources available\#
Ed_Moderator: Are there any fees with belonging?#
Christy: I believe it's $25 annually...
Ed_Moderator: Okay..no cost to join the support group itself
Dick Burns: Correct
Ed_Moderator: But it's 25.00 for yearly membership to VF.
Dick Burns: Yes
Ed_Moderator: So tell us...how often do groups meet? What type of activities do they do? What would happen in a typical meeting?#
Christy: At my last meeting, I had a PhD in psychology come in... (she specializes in chronic illness)... to help teach us coping methods...on how to deal with chronic illness....
Ed_Moderator: Are most meetings with a set agenda..
Christy: Mine are typically although, we have had meetings where we don't have a speaker...
Dick Burns: Yes
Ed_Moderator: and or a time for the participants to just chat with each other
Dick Burns: The most important is often the discussion within the group. The Dr we had this month in Maine said she learned more from the group then she brought top the group.
Ed_Moderator: How often do groups meet typically?
Christy: My group meets every 6 months but some meet more...
Dick Burns: We ask for a minimum of two meeting a years most are at least three
Ed_Moderator: So in these meeting you offer a Q and A with specialist a chance for folks to ask questions of the speaker
Christy: yes - big part at the end...
Ed_Moderator: Dick...are the chapters in bigger cities or really anywhere
Dick Burns: The big cities do have groups but most are area wide like a section of a state
Ed_Moderator: Are there some states or cities where you hope to have new groups established?
Dick Burns: Right now we try to have a chapter in a million population area. For Maine that is the whole state.Dick Burns: Yes Ed there are missing areas in many big cities.
Dick Burns: Contact the VF office of me at burns@vasculitisfoundation .org and we will be in touch
Ed_Moderator: Is experience required? What type of qualifications are needed to begin a chapter?
Dick Burns: There is a great how to start a Chapter book we send out.
Dick Burns: Some knowledge is great but caring is more important.
Ed_Moderator: Christy--you are responsible for the international chapters..which countries have the most and which have the least..or none at all.
Christy: Australia and the UK probably have the most patients.... Christy: and S. Africa has two (one patient and one caregiver)
Dr. Eric: !
Ed_Moderator: Yes, let's open to questions now. If you have one please type a ! and I'll call on you
Dr. Eric: Christy, I was happy to see there's a chapter in Norway.. W have someone in Iceland, who has trouble with English...
Christy: We have about 100 patients in Sweden..
Dr. Eric: I had checked with colleagues in Sweden and Denmark, but couldn't find anything in Norway... thank you!#
Christy: Not sure if we're in Norway. Does Sweden help your patient in Iceland? I'd be happy to put them in touch...
Dr. Eric: If we can get literature in Norwegian, it would help her a lot#
Christy: Eric, translation is probably our biggest problem because it's so costly...
Dr. Eric: Christy, I understand that... I work with an international company, and this is always an issue#
Ed_Moderator: Christy..we have lots of patients in Australia how many chapters there and do you know which cities?#
Christy: Australia HQ I think is in Greensborough, Victoria...at least that is where the newsletter comes out of...
Dick Burns: Melmorne and Perth are the two I know of
Ed_Moderator: I imagine in countries like Aus folks would probably travel a ways to attend#
Cindy: How difficult is it to get doctors to speak and what time of day or days are meetings held?
Christy: my meetings are held on Saturday afternoons....it can be difficult, but I often ask my doctor and her colleagues to come speak..
Christy: I think starting with your own doctor sometimes is the easiest way. Christy: we also have DVDs..of the VF symposium we held in Baltimore back in July...
Dick Burns: The DVD from this symposium are great.
Ed_Moderator: So you might show a video or DVD at the meeting..Neat
Cindy: Thanks--I would like to start something up in this area. Can you check them out? Christy:Yes, we can get them to you, right DicK?
Dick Burns: That way your local folks get the benefit of the national speakers
Ed_Moderator: What support does VF give to chapters. I mean, literature to put out, help in arranging speakers, etc?#
Dick Burns: The sets are available from the VF Office.
Christy: They can actually send out the meeting invitations...They'll send you brochures and any other hard copy material..
Ed_Moderator: Assistance in contacting local press about meeting?
Dick Burns: The topics are locally generated but help is always there at the office in literature etc
Ed_Moderator: What is makeup of attendees...mostly Weg or one vasculitis disease over another?
Christy: right now the make-up is mostly WG patients, but we want that to change!
Dick Burns: In the How to Start book there are fill in letters for local papers
Ed_Moderator: thank you.. Ed_Moderator: Do you have folks introduce themselves at meeting so you have a sense who has what vasc?#
Christy: yes we do, Ed. as I wrote earlier,. definitely introduce ourselves at meetings. Then we get
Dick Burns: The non-line activities list is always available at the VF web site.
Dick Burns: Generally each meeting starts with intros around and the type of Vic is discuss if the person wishes to do so. Generally each meeting starts with intros around and the type of Vic is disscuss if the person wishes to do so.
Cindy: How many folks typically attend?
Christy: my meeting can be anywhere from 6 people to upwards of 30
Dick Burns: There was a question earlier on recruiting other Vas people.... we do not recruit since we do not have lists but we are out to them joining anytime.
Ed_Moderator: Well, our hope is that PAN people will read this and participate
Dick Burns: Generally I see groups of 8 to 20 some larger
Ed_Moderator: As I've mentioned before there will probably not be the same amt of chapters just for PAN patients.Ed_Moderator: it's so rare and so hard to have that many chapters for a specific disease
Christy: yes, that's why it's important to join together as our diseases are similar
Ed_Moderator: Folks..any other questions for Dick or Christy?#
Deanna: are there any groups in Tx? If so, where, how do you join. I sure could use something like this and help
Dick Burns: On the web site is a map that connects you to the local area. San Antonio, TX 78209
********** at 9:30 PM Shelley (guest) joined the room
Ed_Moderator: HI SHELLEY Ed_Moderator: I assume caregivers like Shelly can attend
Bruce (guest): We could use help getting physicians to attend..maybe if VF could get to physicians and nurses associations?
Christy: we have a big parent network at the VF
Dick Burns: They are welcome even if alone.
Shelley (guest): Eric, I have a question
Ed_Moderator: But you are careful about not giving out direct medical advice at these meetings, right?#
Christy: yes, the docs are careful not to give out specific medical advice..
Shelley (guest): Eric can I ask you a question?
Dr. Eric: sure, fire away
Shelley (guest): question, that is how do we, as in my son and the rest of us, handle when his other doc, such as pain management says that PAN should have burned out by nowShelley (guest): He was hospitalized for 5 days, found 2 ulcers in his small intestine, a flare nonetheless
Dr. Eric: there are a lot of things that "should have" happened, but the diseases don't read the textbooks... look at the clinical condition
Shelley (guest): but how do we convince them of this
Dr. Eric: well, 2 ulcers in the small intestine should be pretty good evidence
Bruce (guest): comment.. Pain docs are leery of writing to many Rx for controlled substances #
Shelley (guest): it is, but we had to push for the tests after an endoscope and colonoscopy we understand that
Dr. Eric: Bruce is right... pain docs will sometimes get suspicious of motives, but when there are clear findings, it should convince them
Shelley (guest): we have always been leery of the amt. of pain meds he is on
Dr. Eric: Shelly did they biopsy the lesions... or repair them surgically?
Shelley (guest): there are 2 kinds of pains that the pat. deal with
Dr. Eric: how did they see the lesions?
Shelley (guest): video oscopy
Dr. Eric: Couldn't they take a biopsy at that time?
Shelley (guest): I didn't think to ask
Dr. Eric: too bad... that would confirm PAN or something else
Shelley (guest): what else?
Dr. Eric: ulcerative colitis, Crohn's disease, celiac disease...
Shelley (guest): well, let's take our pick! He did have a celiac plexius block to block the ab painShelley (guest): what is celiac disease?
Dr. Eric: that's kind of the way it goes with bowel lesions... we need to see biopsy material, and even then it's not 100%
Ed_Moderator: So he is really struggling, shelley?
Shelley (guest): emotionally yes, physically yes discouraged
Dr. Eric: Celiac is also called Gluten Sensitive Enteropathy... an autoimmune disease
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