User Tag List

Likes Likes:  0
Page 2 of 2 FirstFirst 12
Results 11 to 15 of 15

Thread: Hello from Connecticut (transplant from the DC metro)

  1. #11
    Join Date
    Nov 2009
    Location
    South of Boston
    Posts
    797
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default

    Although in remission, I have seen Dr. Monach in Boston. I have only had a meet and greet and donated my DNA for his and Dr. Grayson's research. Very much liked him but hope I don't have to see him again.
    Dale.
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

  2. #12
    Join Date
    Mar 2014
    Location
    Connecticut (From: DC metro area)
    Posts
    187
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Annekat - Thank you for the welcome! I know what you mean about finding people who understand what you're going through. My husband's aunt also has an autoimmune condition (ulcerative colitis) and we've been talking a bit more since my diagnosis but she doesn't quite understand what I'm going through and vice versa. I'm glad we will in an age where we can all connect across the globe and feel a little less alone with this rare disease.

    Renidrag - I definitely want to participate in Dr. Monach's research. I conduct research and depend on participants so I feel like I need to pay it forward, especially given that GPA is rare. I hope you won't need to see him again either! Congrats on reaching remission! I hope to see you there one day...

  3. #13
    Join Date
    Jul 2010
    Location
    see map location
    Posts
    4,127
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by lag713 View Post
    Thanks for the advice, Kim! Would you mind sharing the name of your weg specialist? My rheumy is within 10 minutes of home which is very helpful when I make visits so often. I was considering seeing a specialist in Boston (Dr. Paul Monach at Boston University) and participating in a research study that he is conducting. Have you heard of him?

    VCRC Genetic Repository One-Time DNA Study
    Longitudinal Protocol for Wegener's Granulomatosis and Microscopic Polyangiitis
    I would encourage you to join the study to get an expert consultation and to help us try find a better treatment for our GPA. I go to Mayo for their study evaluation and get a good consultation report sent back to my treating doctors. You can sign up for annual visits or quarterly ones. There are about half dozen places collecting data for their study which is a a combined effort of many staff at different locations but all have experts on GPA to see.
    Knowledge is power! Wisdom is using it to make good decisions!

  4. #14
    Join Date
    Oct 2010
    Location
    Ohio
    Posts
    817
    Post Thanks / Like
    Mentioned
    2 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks for sharing your story, welcome to a great place for knowledge and compassion for anything you need. I hope you continue to do well.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  5. #15
    Join Date
    Mar 2014
    Location
    Connecticut (From: DC metro area)
    Posts
    187
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Drz - Thank you for the welcome and recommendation of the study. I will likely participate in the coming months once my graduate school calendar opens up and allows for the trip. I'm glad you've been happy with the consulatations you have received. I look forward to participating.

    Jana - Thank you for the warm welcome! I am really impressed by the information shared here and everyone has been so incredibly kind. I hope you're doing well and continue working toward remission.

Page 2 of 2 FirstFirst 12

Tags for this Thread

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •