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Thread: Looking for your ideas

  1. #1
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    Thumbs up Looking for your ideas

    If you had an opportunity to attend a conference regarding Vasculitis and Wegener's what topics, questions, or break out groups would be of interest or important for you or a caregiver?

    I am trying to get others opinions since we all have the same condition but many different symptoms.

    Please respond and I will collect all suggestions and submit for the upcoming Vasculitis Symposium in Minneapolis next year.

    I am working with the Vasculitis Foundation to help set up the agenda for the next symposium.

    Even if you can't attend your opinion would be appreciated

    Thanks

    Victor
    Last edited by blu4runner; 10-08-2018 at 06:28 AM.

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  3. #2
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    Default Re: Looking for your ideas

    Our daughter was dxd with WG when she was in her teens. I prioritized attending the Arthritis Foundation's annual (summer!!) conference for pediatrics over the Vasculitis Symposium because of the fun events for children, the programming offered for siblings (which allows both parents to attend) and the support for parents. Workshops such as "Parenting With More Than One Diagnosis," "Teaching Children How to be Treatment Compliant," "Strategies for Coping with Pain" (ex: teaching a 7 year old how to deal with pain,) or "Working with your Child's School; Educational Rights for Students with Chronic Illness" are what appealed to me.

    Money was tight with a significant diagnosis, of course, and so the conferences doubled as our family vacation. (Whee, lolol) Our children made good friends they still keep in contact with; the social component of the conference cannot be over-emphasized. I can get info off of the internet, but for children to have the experience of meeting other kids with hair loss or prednisone bellies was irreplaceable.

    I am the co-administrator for a FB group of 95 members whose child has pediatric-onset WG, and I know several other families who are not on FB. Simple math tells you that pediatric-onset WG is a lot more common than believed. Our group talks about meeting up at the Symposium, but it simply hasn't been as pediatric-focused enough for any but one or two to go.

    Thanks for asking!!

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  5. #3
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    Default Re: Looking for your ideas

    I would like to know more about the frequency and severity of the most common side effects or collateral damage as well as the most rare ones and various treatments for the problems created by GPA.
    Knowledge is power! Wisdom is using it to make good decisions!

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  7. #4
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    Default Re: Looking for your ideas

    What are the results of the latest studies on maintenance protocols?

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    Default Re: Looking for your ideas

    Quote Originally Posted by John S View Post
    What are the results of the latest studies on maintenance protocols?
    I was in some studies at Mayo for several years. I wonder what they learned from them if any were concluded.
    I
    Knowledge is power! Wisdom is using it to make good decisions!

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