PAN Support Network  (PSN) / Vasculitis Chat

Sept 30, 2012

Participants:

Ed Becker:                             Director, PAN Support Network/Chat Moderator

Patti Kemp:               Coordinator for the Vasculitis Foundation Pediatric and Parent      

                                    Education Program

Mike:                          PAN Group Member/Parent of a child with vasculitis

_____________________________________________________________________________

                                                                                             Introduction:
Ed Moderator:
Hello and welcome to the PAN Support Network Web Chat.
 The PAN Support Network is a not-for-profit patient advocacy organization for patients and caregivers who are dealing with Polyarteritis Nodosa.
The purpose of our monthly web chat is to bring together all members of the vasculitis community: patients, caregivers, rheumatologists, researchers, and other newsmakers in the vasculitis/autoimmune world.

Tonight we have guest, Patti Kemp, who is going to talk about a new program from the Vasculitis Foundation that is especially designed for parents/families dealing with vasculitis.  As a teenager with Granulomatosis with Polyangiitis (Wegener’s), Patti struggled with more challenges than most kids see in a lifetime.  Today, as an adult, Patti is working to address the needs of parents and kids who unfortunately have to deal with vasculitis in their lives.

Patti will talk about the new Vasculitis Foundation Pediatric and Parent Education program that is designed to offer parents of kids with vasculitis a network of support, education, clinical resources, and the ability to connect with other parents.

I encourage you to view the following videos on the Vasculitis Foundation Awareness Channel:

1.  An overview of the Pediatric and Parent Education Program presented by Patti Kemp:
http://www.youtube.com/watch?v=RV_Qw6ujIzw

2.  Patti’s Extraordinary Story.  Here, she talks about her experience with  Granulomatosis with Polyangiitis (Wegener’s) as a teenager.  Quite an inspiring story.
http://www.youtube.com/watch?v=D2HOnHs2vvg

3.  Dr. Peter Weiser, a pediatric rheumatologist talks about treating kids and young adults with vasculitis.
http://www.youtube.com/watch?v=9w977tvdTNE

To learn more about the Pediatric and Parent Education program contact the Vasculitis Foundation at:
1.816.436.8211 or 1.800.277.9474

If you have any questions about the PAN Support Network please contact me at: eob50@consolidated.net

Ed Moderator: Welcome Patti and Mike.   Patti, Just tell us a little bit about yourself and your journey with vasculitis.  Which type, when dx'ed, how you are now.

Patti: Ok. Well, I'm 37 years old and have GPA aka Wegener's granulomatosis.  I was diagnosed when I was about 21.  But have had the disease since I was probably 16... Was misdiagnosed for quite a few years.  It started out with sinus problems by the time I was diagnosed; I was having frequent throat surgeries to stop my subglottic stenosis from growing, which is basically a narrowing of my throat below the vocal chords... I was first treated with methotrexate.Patti: That didn't work. So I was started on cyclophosphamide, because my throat wouldn't stop growing shut, basically. So after a few months on cyclophosphamide, they thought I was in remission. So I went off backpacking to Australia. But I wasn't in remission and the disease came back in my eyes. So I was treated with cyclo again while I was down there and kept backpacking on the drugs. I was down there for a year, plus visited New Zealand and Fiji. I came back to Canada (I should mention to everyone that I'm Canadian!) and spent some more time on cycloe. Had another throat operation. Then figured I was ok and took myself off to London, England to do a Master’s degree.: Finally came off cyclo but all up I was on it for about 4 years. Which is too long really. Anyway, I had a two more surgeries on my throat about two years ago. Brings the total up to about 23 surgeries?  I've lost count... And I've been on azathiprine (imuran) since I came of cyclo plus various times with prednisone. So I think that's the disease in a nutshell.

Ed Moderator: Quite an amazing story, Patti.

Patti: Almost a year ago, my husband (who is English) and I moved back to Canada. We decided we wanted to try life over here.

Ed Moderator: And are you in remission now?

Patti: I would say that I am in. remission. In fact, I would say I've been in remission for maybe 8 years. Even though I had those throat surgeries, because I think those were actually something like scar tissue building up and I think it might be happening again. But other than that, I think I'm pretty healthy.  I mean, I get joint pain and I get tired. But I know it could be so much worse. And you know, if I can do a triathlon, then I'm not complaining!

Ed Moderator: Okay, so before we jump into the nuts and bolts of the new program, I realized that. You have a perfect perspective of what it's like to be a teenager or young adult with vasculitis. Tell me about that.

Patti: I don't know if it's the perfect perspective, but I was that age when it all started.  It took a long time to get diagnosed. So unlike some kids who get really sick right away my illness kind of simmered away.
 So I spent most of my teenaged years feeling really tired and not knowing why and wondering if other kids felt that way. With GPA, you get really horrible nasal crusting and I remember just being so embarrassed and hoping other kids wouldn't find out about it. Then the summer before I started university, I was so tired and I lost my voice - which everyone else thought sounded cool but I just struggled so hard with breathing.  So there was just a lot of confusion and a lot of feeling different.

Ed Moderator: It's hard enough being a healthy teenager, but to be one with an illness---must be so hard.

Patti: It's confusing and hard and I think emotional too. But being a teenager is like that anyway! It was harder at university actually when everyone is going out partying, having fun. I'm just talking about being sick at university. It's hard when all the kids are going out and having fun and you're just too tired to do anything or having loads of doctors’ appointments and not wanting to explain to anyone.  And trying not to miss too much class. And then when I started having the regular surgeries, I would basically disappear for a few days at a time. Starting cyclo was the hardest thing.  Also, all of the surgeries. But it's all the things that come along with it - trying to explain what you're "different"...

Ed Moderator: No doubt. Yes.

Patti: And wondering what it means when everyone else is planning their futures.

Ed Moderator: Okay, so you have the perspective as a young adult.  But yet, you probably also have a deep appreciation for what it must be like to be a parent of a child with vasculitis too.  I mean, from your own experience. Stress beyond belief#

Patti: Yes, I think as I grow older I can see it too.  I look at my nieces and wonder how it would feel if they got sick like I did and I know what my mom and dad went through. I think all parents worry about their  child and the need to protect them is so strong. Yet you feel helpless, too, and that would be very hard.

Ed Moderator: Now, tell me about the importance of this new program which for the sake of simplicity I will call it the Vasculitis Foundation Pediatric and Parent Education...PPE..

Ed Moderator: What need will this program address#

Patti: PPE - perfect.  The PPE is going to be aimed at both pediatric patients their parents and also young adults with vasculitis. We figure there isn't enough information out there for these specific patients. We want to have information that cuts across all vasculitis but is applicable to this group of people. We hope to provide them with information about the diseases. But also information about how to cope as a parent/child/young adult. So it will be an education resource... We want to link up people who have already experienced their vasculitis journey with people just starting out. So we want to start out with a website. That will have information on the diseases so that would be useful for newly diagnosed parents and patients.  We also want to have a section about ongoing management and hopefully we can tackle all sorts of issues specific to parents, kids and young adults. We also want to tackle some of the aspects of mental health.

Ed Moderator: What have you or others in VF heard from parents that made it seem like this was a program that was needed?

Patti: Joyce gets lots of phone calls at the Vasculitis Foundation office from parents wondering what to do and a lot of them mention things like having difficulty convincing... their kids to take medication... or what to do about fertility... or gaining weight on prednisone... or wanting to talk to someone else who's been through it all...  Lots of parents have questions about what it means for their child's future...

Patti: I think she also has spoken to quite a few young adults who have done so well  and they would be fantastic role models for newly diagnosed patients.

Ed Moderator: One example of a challenge is cited in Dr. Weiser's video. He says kids think only about now. They have a stomach ache from meds right now!

Patti: Exactly... So it's easier not to take the meds now...

Ed Moderator: They say I don't want to take it...not thinking of long term consequences.

Patti: Absolutely...how do you explain long term to kids?

Ed Moderator: It’s so critical that a parent be engaged, isn't it?

Patti: Absolutely. But when you think about all those complexities about the parent child relationship.  That's one more complicating factor to throw into the mix. Especially when you start thinking about teenagers! I remember what it was like when I decided I wanted to go to doctor's appointments on my own. It was hard for my mom to let go which I can understand now. She wanted to know everything that my doctor said to me. But at the same time, I wanted that independence. It's hard to get that balance right. I think it can be a real struggle to try and grow up, but at the same time, you're so dependent on your parents or your caregivers. So it makes growing up more complicated.  On one hand, you're forced to grow up more quickly.  But at the same time, at least for me, it meant I was dependent on my family a lot more, for a lot longer.  And so maybe it delayed some aspects of maturity too.

Ed Moderator: If a parent wants more info right now they should call the Vasculitis Foundation or contact you?

Patti: Yep definitely.  Either way.

Ed Moderator: It's not yet out on the new foundation web site but they can call the Vasculitis Foundation directly.

Patti: Yep, that's the best idea. We're just brainstorming ideas right now to make sure that our proposal has hit all the areas parents and kids want to know about or want more information on...

Ed Moderator: And so when a parent calls and says I'd like to be involved--what type of things will you do?  Will they become part of a mailing list or some sort of communication?

 Or, as you say...give info and ideas to grow the program?

Patti: First thing is we've been mailing out the proposal with all the ideas about the program. And we've been asking for feedback.

Then in mid-October, we're going to pull all the ideas together.  And start to get all the information together for the website. And once we get the website online, then of course we would love feedback...

Ed Moderator: So this is really a chance for parents to share ideas, needs, experiences, to help make this program most effective. 

Patti: Absolutely - now is the time to do it. We are not looking for a big commitment, but just feedback. We want your opinion on what you would like to see in the program.

Ed Moderator: Thanks and I hope the PAN Support Network can be a resource of new participants. That's most valuable.  Well, take care and I will steer folks your way.

Patti: We’re going to have a blog. And webinars featuring both information from doctors, and parents talking about their experiences. Plus we are also going to provide a way for newly diagnosed parents to link up with parents who are willing to talk to them.

Patti: So however they would like to communicate - initially I would think by email sort of like a one on one mentoring

Ed Moderator: Also to clarify is this program just open to the parents or are the kids themselves encouraged to join. Or maybe the whole family

Patti: The whole family... We're planning to link up kids the same way.  The  blog will feature information for kids too and kids/young adults talking  about their experiences.

Ed Moderator: And to ask the obvious: Why is it so important the whole family needs to be on board?  

Patti:   I think when a child has vasculitis the whole family goes on the journey everyone is involved and the whole family needs information.  Plus they have to all deal with the stress involved. So it would be great if we could support them all...

Ed Moderator: Will this program provide resources to help parents connect to clinics or rheumatologists: maybe a list of pediatric rheumatologists?


Patti:
Yes, I believe so.

Ed Moderator: GREAT. And we have with us a gentleman, Mike, who is a parent with a child who has vasculitis   Anything to add?   Tell me about some of the challenges that you as a parent face.
And do you see the value in this type of program#


Mike:
My daughter has a tough time explaining her situation to her friends about what she has - and she has challenges understanding her limitations herself as well. She was an avid soccer player and she wants to continue doing that - while that scares me a lot.   I am yet to go through the video, I am sure there is a lot for me to learn there.

Ed Moderator: I hope that you will become involved in this Vasculitis Foundation program, Mike.  I think it will give you a connection to other parents.

Mike: I will do my best

Patti: Thanks very much, Ed.  Mike, I'd be more than happy for any help you could offer.  This program is for parents and families so we want to hear from them so we can make this tailored to their specific needs and concerns.

Ed Moderator: Well, Patti is very busy and has to go, but we so appreciate your time

Patti: Thanks very much, Ed, it's been a pleasure.  And best wishes to Mike!


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