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    Article on pediatric Wegener’s

    https://www.theatlantic.com/family/archive/2019/05/support-group-parents-whose-kids-have-rare-disease/590680/
  2. Thread: Dry cough

    by whatthewhat
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    Re: Dry cough

    Our daughter had an inexplicable cough and finally she was compliant with a prescription for a once a day inhaler and that did the trick. It was this weird dry cough kind of like yours, not all day....
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    Sticky: Re: Wegeners Granulomatosis / GPA specialists

    Our daughter has been treated by several Pediatric rheumatologists. One I recommend without hesitation is Suhas Radhakrishna, who works out of Rady Children's Hospital in San Diego, CA. Also, I have...
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    Re: Building Resistance to Rituxan

    Thanks for tagging me back in the thread, Alysia. I have heard that the Healthwell Foundation (pediatric wing of Genentech) no longer gives grants to Pediatric WG patients for Rituxan. :-(
  5. Thread: Forum Map

    by whatthewhat
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    Re: Forum Map

    Holy New Year, fearless leader! We could have a thread, I suppose, with just "where are you from" as the comments? Or maybe, even better, where you are treated! But, I tend to agree that if it wasn't...
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    Re: Fructured Toe

    Nothing to add medically; just super sorry you are going thru this :(
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    Re: Newly diagnosed and scared

    Well, to start "Yogasloth" is such a brilliant username that I can't help but cheer you on :thumbsup: And you also nailed that phenomenon that any forum like this or FB group is going to have a...
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    Re: Wg destroyed my life

    Oh man, what a turd! I am so sorry. You did not deserve him leaving like that - and Rtx does not deserve to be treated that way either! It's not even chemo for heaven's sake. YOU are practicing brave...
  9. Re: Curious...how many members work with this illness

    In most of the pediatric cases I know of, the child is able to go back to school and maintain regular children's activities, although they very very rarely re-achieve the level of athletic prowess so...
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    Re: 13yr daughter has Wegeners

    Here's a study about the efficacy of Rtx and Ctx in refractory WG https://www.ncbi.nlm.nih.gov/pubmed/28134075/ and here's an article citing a study about how pediatric-onset WG is refractory...
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    Re: 13yr daughter has Wegeners

    I just realized you are probably from the UK. I think you might want to ask your docs to consult with ped rheumys from the US - I believe our treatments are a little more effective than yours (?)
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    Re: 13yr daughter has Wegeners

    Thanks, Alysia, for the heads-up! Hello Smytk, I have sent you a private message. You can read about my daughter's story by clicking my profile name etc. Although my daughter has not had eye...
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    Re: Building Resistance to Rituxan

    Alysia and others might have better insight than I. All I know is on FB I had chatted with "Lennie Saurkraut" (did I get that right?) about this same topic, since he and a woman on the WG FB group...
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    Re: GPA diagnosis very recently confirmed

    To be very blunt: I am no doctor, but I have been researching studies about GPA / WG over the past 5 years. My active and healthy child was diagnosed, and we were a fitness-focused family living in...
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    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...
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    Re: pberggren memorial thread

    I believe, and I think you do too, that you have Divine help in carrying whatever emotions are too much to handle alone. One help you have been given is this forum, full of people who not only care...
  17. Re: Breaking Research: BCG Vaccine Reduces A1c Long-Term for type diabetes

    I am so excited for ANY progress in AI therapies!! But I think it's CD19 that's the issue for WG? I thought that, to oversimplify, the vaccine was found to do for Type 1 what Rtx does for WG.
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    Re: New gal with kidney question

    ... I want to add:

    I think it's important to get your labs done at the same place for consistency in readings & results, and to know your own #'s in the areas in which WG is affecting your own...
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    Re: New gal with kidney question

    Hi Courtney,

    My daughter was diagnosed as a young teen, and when she turned 18 I turned The Folder with lab #s over to her, so forgive me for not having them to refer to!

    She had been on Mtx...
  20. Re: Does NHS in UK cover for students of other countries?

    Nagesh, I have pm'd you about a child in India with Wegener's.
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    Re: Another Warrior has lost his Battle!

    Such sad news...
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    Re: High calcium in urine

    The medicine angle rings a faint bell, but I am sorry I don't remember specifics, and I don't have my notes anymore. While you wait for the doc to get back to you, what about your water intake? Has...
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    Re: I love someone with Wegeners

    Hi Lynette, welcome. I am the mother to a young woman who has Wegener's (she was diagnosed 5 years ago at age 14.) I remember where I was the first time I read the forum after her diagnosis. After I...
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    Re: Anniversary

    I mean this in the nicest possible way - your absence is awesome! :) Congratulations! You have helped so many through your work on this forum, and a break from having WG foremost in your thoughts is...
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    Re: Rituximab Assistance?

    Yes, when our daughter was a minor we received financial help from the Healthwell Foundation, and now that she's an adult the grant comes from Genentech. Good luck! It's worth the hassle. And then...
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