Guest guest Posted March 21, 2000 Report Share Posted March 21, 2000 Hello Joanna I haven't yet been to the ajao conference yet. But I am trying to make it this year. I do know of others that have been to the conference that will be coming around to the list soon. I do have some information up on the ajao conference on my website but not much. You could try and get ahold of your local chapter of the arthritis foundation and see if they could help with the cost. I know it's spendy I am in Montana and hopping to make the trip this year. I hear it is a great experince. You say your from the NW who is your guys Doctor do you guys go to children's hospital in seattle? Well I am sure ajaomom will be coming around today and see has been to one before so I think should would be able to answer your questions about the conference. Also Faces should be by tomorrow. I don't know if I have helped any. JRA World http://www.geocities.com/jraworld AJAO conference > From: " J. Miyake " <jmiyake@...> > > Our daughter has had psoriatic arthritis since she was one, she is now > 4. She has been on methotrexate for the last two and a half years with > no end in site. Over time my husband and I have been growing more and > more concerned about long term methotrexate usage. > > My daughter's rheumy suggested that our family might want to consider > going to this years AJAO Conference. I think our questions tend to be > more than can be handled in an office visit. I think the conference > would give us the opportunity learn more and meet other families. But, > I'm concerned about the expense. > > We live in the pacific northwest, this years conference is in Disney > World, Florida. > > Have other people gone? What did you think of the quality of the > presentations? Are the medical presenters really open to being > questioned by parents? > > Thanks for your input, Joanna. > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > 1/2120/1/_/524922/_/953619848/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2000 Report Share Posted March 21, 2000 In a message dated 3/21/00 1:25:00 AM Eastern Standard Time, jmiyake@... writes: << World, Florida. Have other people gone? What did you think of the quality of the presentations? Are the medical presenters really open to being questioned by parents? >> I have gone to 4 conferences so far, and they are wonderful. You just won't get the full impact until you attend. I will be glad to email you some info if you would like, and answer any questions you might have. And yes there are many doctors there open to answering pretty much any and all questions. And they also allow a lot of time for parent to parent interaction. Talk to you soon, n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2000 Report Share Posted March 21, 2000 hi, excuse my crude typing. i just had to have a total left shoulder joint replacement last month and still can't use my arm very much. i am 22, 23 in 2 months, and have had total body systemic rheumatoid arthritis since i was 5. i found this site by accident, but as a child who grew up with a severe case of this disease i think i might have a different point of view for any parents who might want to ask me questions, i'm not a doc, but i bet i have more personal experience. i feel incredible empathy for your children and yourselves. i can only imagine what my mother went through watching me grow up with this. if i can offer anything, i'd be glad to, even talking to your children so they will know they are not alone and that there is proof that they can make it in this world. thanks, brandy hendricks ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2000 Report Share Posted March 22, 2000 Hi Joanna, I have JRA and have been a speaker at the AJAO conferances, generally speaking there is not a LOT of medical professionals that attend, usually the speakers are fellow parents and/or patients. It is usually set up as a question and answer type scession and any and all questions are welcomed. I personally complained about the Disney World location. Not sure what they thought they were doing but disney world is an event by itself and there is no way we would try to do both at one shot. Locations in the past have been more centrally located so I'm waiting to see if the next one is arranged better. Hope that helps, Hugs, Debbie Schuh - AJAO conference From: " J. Miyake " <jmiyake@...> Our daughter has had psoriatic arthritis since she was one, she is now 4. She has been on methotrexate for the last two and a half years with no end in site. Over time my husband and I have been growing more and more concerned about long term methotrexate usage. My daughter's rheumy suggested that our family might want to consider going to this years AJAO Conference. I think our questions tend to be more than can be handled in an office visit. I think the conference would give us the opportunity learn more and meet other families. But, I'm concerned about the expense. We live in the pacific northwest, this years conference is in Disney World, Florida. Have other people gone? What did you think of the quality of the presentations? Are the medical presenters really open to being questioned by parents? Thanks for your input, Joanna. ------------------------------------------------------------------------ DON'T HATE YOUR RATE! Get a NextCard Visa, in 30 seconds! Get rates as low as 0.0% Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! 1/2120/1/_/524922/_/953619848/ ------------------------------------------------------------------------ For links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html .................................................................................\ .. iWon.com http://www.iwon.com why wouldn't you? .................................................................................\ .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2000 Report Share Posted March 22, 2000 Thanks for your help , Actually we live in Maple Ridge which is a suburb of Vancouver, BC in Canada. My daughter goes to the Arthritis Center in Vancouver and sees one of three Rheumotologists. They also offer physio in the same building. Medically it is great but I never seem to meet any other moms. So this list is nice. I'm glad to have learned about it. Joanna jraworld wrote: > > From: " jraworld " <jraworld@...> > > Hello Joanna > > I haven't yet been to the ajao conference yet. But I am trying to make it > this year. I do know of others that have been to the conference that will > be coming around to the list soon. I do have some information up on the > ajao conference on my website but not much. You could try and get ahold of > your local chapter of the arthritis foundation and see if they could help > with the cost. I know it's spendy I am in Montana and hopping to make the > trip this year. I hear it is a great experince. You say your from the NW > who is your guys Doctor do you guys go to children's hospital in seattle? > Well I am sure ajaomom will be coming around today and see has been to one > before so I think should would be able to answer your questions about the > conference. Also Faces should be by tomorrow. I don't know if I have > helped any. > > > JRA World > http://www.geocities.com/jraworld > AJAO conference > > > From: " J. Miyake " <jmiyake@...> > > > > Our daughter has had psoriatic arthritis since she was one, she is now > > 4. She has been on methotrexate for the last two and a half years with > > no end in site. Over time my husband and I have been growing more and > > more concerned about long term methotrexate usage. > > > > My daughter's rheumy suggested that our family might want to consider > > going to this years AJAO Conference. I think our questions tend to be > > more than can be handled in an office visit. I think the conference > > would give us the opportunity learn more and meet other families. But, > > I'm concerned about the expense. > > > > We live in the pacific northwest, this years conference is in Disney > > World, Florida. > > > > Have other people gone? What did you think of the quality of the > > presentations? Are the medical presenters really open to being > > questioned by parents? > > > > Thanks for your input, Joanna. > > > > ------------------------------------------------------------------------ > > DON'T HATE YOUR RATE! > > Get a NextCard Visa, in 30 seconds! Get rates as low as > > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > > Apply NOW! > > 1/2120/1/_/524922/_/953619848/ > > ------------------------------------------------------------------------ > > > > For links to websites with JRA info visit: > > http://www.geocities.com/Heartland/Village/8414/Links.html > > > > > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates > as low as 0.0% Intro APR and no hidden fees. > Apply NOW! > 1/975/1/_/524922/_/953656683/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2000 Report Share Posted March 22, 2000 Hi Joanna I've only been to one conference---the National Conference in D.C. in '98. There were quite a lot of professional speakers at that one, as well as some sessions run by parents with years and years of experience. I found it all quite helpful. It was also nice to meet and socialize with other parents who understand what life is like for our kids. Friends and family try, but unless you've had firsthand experience...... especially when the kids " look healthy " . My daughter loved it, too. She enjoyed all the conference activities. She also (at the age of 6) said it was so nice to be with other kids with JRA---she didn't have to explain anything to them! As for cost---it is an expensive trip. Sometimes the arthritis foundation chapters sponsor families. Perhaps you could contact them? By the way---I understand the " no end in sight " re methotrexate. was diagnosed pauci, has since gone on to poly, and has been taking mtx for 5 years now. We have no idea when we'll be able to take her off it. Liz " J. Miyake " wrote: > > From: " J. Miyake " <jmiyake@...> > > Our daughter has had psoriatic arthritis since she was one, she is now > 4. She has been on methotrexate for the last two and a half years with > no end in site. Over time my husband and I have been growing more and > more concerned about long term methotrexate usage. > > My daughter's rheumy suggested that our family might want to consider > going to this years AJAO Conference. I think our questions tend to be > more than can be handled in an office visit. I think the conference > would give us the opportunity learn more and meet other families. But, > I'm concerned about the expense. > > We live in the pacific northwest, this years conference is in Disney > World, Florida. > > Have other people gone? What did you think of the quality of the > presentations? Are the medical presenters really open to being > questioned by parents? > > Thanks for your input, Joanna. > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > 1/2120/1/_/524922/_/953619848/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2000 Report Share Posted March 22, 2000 Welcome to the list . I am sure you can be lots of help to us parents. My daughter, age 11, has systemic arthritis. Do you still have it now, or are you over it and dealing with the after effects of it? n was diagnosed just 5 months ago, so we are still kind of new to this. Re: AJAO conference >From: " Hendricks " <brandy_erin@...> > >hi, excuse my crude typing. i just had to have a total left shoulder joint >replacement last month and still can't use my arm very much. i am 22, 23 in >2 months, and have had total body systemic rheumatoid arthritis since i was >5. i found this site by accident, but as a child who grew up with a severe >case of this disease i think i might have a different point of view for any >parents who might want to ask me questions, i'm not a doc, but i bet i have >more personal experience. i feel incredible empathy for your children and >yourselves. i can only imagine what my mother went through watching me grow >up with this. if i can offer anything, i'd be glad to, even talking to your >children so they will know they are not alone and that there is proof that >they can make it in this world. > thanks, brandy hendricks >______________________________________________________ >Get Your Private, Free Email at http://www.hotmail.com > > >------------------------------------------------------------------------ >PERFORM CPR ON YOUR APR! >Get a NextCard Visa, in 30 seconds! Get rates as low as >0.0% Intro or 9.9% Fixed APR and no hidden fees. >Apply NOW! >1/2121/1/_/524922/_/953694711/ >------------------------------------------------------------------------ > >For links to websites with JRA info visit: >http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2000 Report Share Posted March 22, 2000 Hi , I am new at this list too. I find it to be very helpful. How did you find out that your daughter had systemic arthritis? I hear that is the worst of the three JRA's is this true? Our daughter just has a few joints and I am amazed how many other children there are with JRA. What is the diffence in systemic arthritis and the rest. Does the blood work show different signs? Also, did your daughter start out with the lesser JRA and it turn into systemic? Sorry so many questions. Just trying to figure out what the future holds. Re: AJAO conference >From: " Hendricks " <brandy_erin@...> > >hi, excuse my crude typing. i just had to have a total left shoulder joint >replacement last month and still can't use my arm very much. i am 22, 23 in >2 months, and have had total body systemic rheumatoid arthritis since i was >5. i found this site by accident, but as a child who grew up with a severe >case of this disease i think i might have a different point of view for any >parents who might want to ask me questions, i'm not a doc, but i bet i have >more personal experience. i feel incredible empathy for your children and >yourselves. i can only imagine what my mother went through watching me grow >up with this. if i can offer anything, i'd be glad to, even talking to your >children so they will know they are not alone and that there is proof that >they can make it in this world. > thanks, brandy hendricks >______________________________________________________ >Get Your Private, Free Email at http://www.hotmail.com > > >------------------------------------------------------------------------ >PERFORM CPR ON YOUR APR! >Get a NextCard Visa, in 30 seconds! Get rates as low as >0.0% Intro or 9.9% Fixed APR and no hidden fees. >Apply NOW! >1/2121/1/_/524922/_/953694711/ >------------------------------------------------------------------------ > >For links to websites with JRA info visit: >http://www.geocities.com/Heartland/Village/8414/Links.html > > ------------------------------------------------------------------------ PERFORM CPR ON YOUR APR! Get a NextCard Visa, in 30 seconds! Get rates as low as 0.0% Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! 1/2121/1/_/524922/_/953750650/ ------------------------------------------------------------------------ For links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2000 Report Share Posted March 22, 2000 Dear Mark, Systemic arthritis affects the whole body. Some of the classic symptoms are fever that occurs once or twice a day, rashes that appear in late afternoon, weight loss, anemia, liver, spleen or heart enlargement. n started with a rash and fevers. The fevers lasted for 35 days. When she was at the hospital they found her liver and spleen and lymph nodes enlarged. Blood tests can be inconclusive. Usually there will be an elevated sed. rate and C reactive protein. Everything else will or can be normal. It is the worst type of arthritis to get, but many children will and do outgrow it. After the fevers, up to 6 months later, then the arthritis presents itself. It most often strikes the wrists, and then can go anywhere. Some kids can have more than 5 joints affected and some have less than five joints. When n flares the fevers and rash come back with a fatigue, and inability to walk due to overall pain. n no longer has the fevers, but she has had the rash for 5 months now. It always presents itself in late afternoon. The doctors don't know what causes it, though there are many theories, and can't tell us what the future holds. Medicines are pretty much the same for all of the arthritises, although systemic kids may be more on steroids to control organ involvement and the fevers. Good luck. P.S. n is 11. Re: AJAO conference > > >>From: " Hendricks " <brandy_erin@...> >> >>hi, excuse my crude typing. i just had to have a total left shoulder joint >>replacement last month and still can't use my arm very much. i am 22, 23 >in >>2 months, and have had total body systemic rheumatoid arthritis since i was >>5. i found this site by accident, but as a child who grew up with a severe >>case of this disease i think i might have a different point of view for any >>parents who might want to ask me questions, i'm not a doc, but i bet i have >>more personal experience. i feel incredible empathy for your children and >>yourselves. i can only imagine what my mother went through watching me grow >>up with this. if i can offer anything, i'd be glad to, even talking to >your >>children so they will know they are not alone and that there is proof that >>they can make it in this world. >> thanks, brandy hendricks >>______________________________________________________ >>Get Your Private, Free Email at http://www.hotmail.com >> >> >>------------------------------------------------------------------------ >>PERFORM CPR ON YOUR APR! >>Get a NextCard Visa, in 30 seconds! Get rates as low as >>0.0% Intro or 9.9% Fixed APR and no hidden fees. >>Apply NOW! >>1/2121/1/_/524922/_/953694711/ >>------------------------------------------------------------------------ >> >>For links to websites with JRA info visit: >>http://www.geocities.com/Heartland/Village/8414/Links.html >> >> > > >------------------------------------------------------------------------ >PERFORM CPR ON YOUR APR! >Get a NextCard Visa, in 30 seconds! Get rates as low as >0.0% Intro or 9.9% Fixed APR and no hidden fees. >Apply NOW! >1/2121/1/_/524922/_/953750650/ >------------------------------------------------------------------------ > >For links to websites with JRA info visit: >http://www.geocities.com/Heartland/Village/8414/Links.html > > > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >1/936/1/_/524922/_/953758145/ >------------------------------------------------------------------------ > >For links to websites with JRA info visit: >http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2000 Report Share Posted March 22, 2000 Liz, Are you going to Disney??? AJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2000 Report Share Posted March 23, 2000 AJ, Our whole family is going to the conference this year. We'll just stay a couple of extra days so that the kids can enjoy Disney as well. Are you going? Liz ajaomom@... wrote: > > From: ajaomom@... > > Liz, > Are you going to Disney??? AJ > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > 1/937/1/_/524922/_/953782622/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2000 Report Share Posted March 24, 2000 Oh, I wish these conferences were closer to home! I hope those of you who are able to attend will share news of some of the topics discussed and let the rest of us know how it was. Sounds like a great event. ~Georgina wrote: > AJ, > Our whole family is going to the conference this year. We'll just stay a > couple of extra days so that the kids can enjoy Disney as well. Are you > going? > Liz > > ajaomom@... wrote: > > Liz, > > Are you going to Disney??? AJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2000 Report Share Posted March 24, 2000 Georgina If I do end making it to the conference I will be doing a specail section on my website on it. Also next year there is one in seattle that I have been told about. JRA World http://www.jraworld.com Re: AJAO conference > From: Georgina <gmckin@...> > > Oh, I wish these conferences were closer to home! I hope those of you > who are able to attend will share news of some of the topics discussed > and let the rest of us know how it was. Sounds like a great event. > > ~Georgina > > wrote: > > > AJ, > > Our whole family is going to the conference this year. We'll just stay a > > couple of extra days so that the kids can enjoy Disney as well. Are you > > going? > > Liz > > > > ajaomom@... wrote: > > > > Liz, > > > Are you going to Disney??? AJ > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > 1/936/1/_/524922/_/953885107/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2000 Report Share Posted March 24, 2000 Debbie. do you know if there is a website with more info. for the conference? I live in Atlanta and would be interested in going but I am not sure of the dates and times. Any info. would be helpful. Thanks Angel Beers AJAO conference From: " J. Miyake " <jmiyake@...> Our daughter has had psoriatic arthritis since she was one, she is now 4. She has been on methotrexate for the last two and a half years with no end in site. Over time my husband and I have been growing more and more concerned about long term methotrexate usage. My daughter's rheumy suggested that our family might want to consider going to this years AJAO Conference. I think our questions tend to be more than can be handled in an office visit. I think the conference would give us the opportunity learn more and meet other families. But, I'm concerned about the expense. We live in the pacific northwest, this years conference is in Disney World, Florida. Have other people gone? What did you think of the quality of the presentations? Are the medical presenters really open to being questioned by parents? Thanks for your input, Joanna. ------------------------------------------------------------------------ DON'T HATE YOUR RATE! Get a NextCard Visa, in 30 seconds! Get rates as low as 0.0% Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! 1/2120/1/_/524922/_/953619848/ ------------------------------------------------------------------------ For links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html ............................................................................. ...... iWon.com http://www.iwon.com why wouldn't you? ............................................................................. ...... ------------------------------------------------------------------------ MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE! Get a NextCard Visa, in 30 seconds! Get rates as low as 0.0% Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! 1/2122/1/_/524922/_/953685205/ ------------------------------------------------------------------------ For links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2000 Report Share Posted March 24, 2000 I have some info on the conference on my website. It's not much but it gives the dates and a little more info. Just go to the events page. JRA World http://www.jraworld.com AJAO conference > > > From: " J. Miyake " <jmiyake@...> > > Our daughter has had psoriatic arthritis since she was one, she is now > 4. She has been on methotrexate for the last two and a half years with > no end in site. Over time my husband and I have been growing more and > more concerned about long term methotrexate usage. > > My daughter's rheumy suggested that our family might want to consider > going to this years AJAO Conference. I think our questions tend to be > more than can be handled in an office visit. I think the conference > would give us the opportunity learn more and meet other families. But, > I'm concerned about the expense. > > We live in the pacific northwest, this years conference is in Disney > World, Florida. > > Have other people gone? What did you think of the quality of the > presentations? Are the medical presenters really open to being > questioned by parents? > > Thanks for your input, Joanna. > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > 1/2120/1/_/524922/_/953619848/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > ............................................................................. > ..... > iWon.com http://www.iwon.com why wouldn't you? > ............................................................................. > ..... > > > ------------------------------------------------------------------------ > MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > 1/2122/1/_/524922/_/953685205/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > 1/937/1/_/524922/_/953932003/ > ------------------------------------------------------------------------ > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2000 Report Share Posted March 24, 2000 In a message dated 3/23/00 5:43:43 AM Eastern Standard Time, smithfamilyzoo@... writes: << AJ, Our whole family is going to the conference this year. We'll just stay a couple of extra days so that the kids can enjoy Disney as well. Are you going? Liz >> Hi Liz, Yep, me and my 2 youngest!!!! And i think i am gonna try and drag aaron (jraworld) along too!!!! AJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2000 Report Share Posted March 24, 2000 Angel, I have info if you want i can email it to you directly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2000 Report Share Posted March 26, 2000 Hi Joanna, There are very few children with JRA on our island and the two families that I do know live on the other side, quite a drive. We do see each other at doctors visits and occassionally at the mall but I feel like I know our listmembers so much better, even though we're scattered all over the globe, because we share our children's news on a more regular basis. We don't have a chapter of the Arthritis Foundation here, either. So I'm very grateful for the support and information I've found online. Isn't the internet marvelous Take Care, Georgina " J. Miyake " wrote: > Thanks for your help , > > Actually we live in Maple Ridge which is a suburb of Vancouver, BC in > Canada. My daughter goes to the Arthritis Center in Vancouver and sees > one of three Rheumotologists. They also offer physio in the same > building. Medically it is great but I never seem to meet any other > moms. So this list is nice. I'm glad to have learned about it. > > Joanna > > jraworld wrote: > > > > From: " jraworld " <jraworld@...> > > > > Hello Joanna > > > > I haven't yet been to the ajao conference yet. But I am trying to make it > > this year. I do know of others that have been to the conference that will > > be coming around to the list soon. I do have some information up on the > > ajao conference on my website but not much. You could try and get ahold of > > your local chapter of the arthritis foundation and see if they could help > > with the cost. I know it's spendy I am in Montana and hopping to make the > > trip this year. I hear it is a great experince. You say your from the NW > > who is your guys Doctor do you guys go to children's hospital in seattle? > > Well I am sure ajaomom will be coming around today and see has been to one > > before so I think should would be able to answer your questions about the > > conference. Also Faces should be by tomorrow. I don't know if I have > > helped any. > > > > > > JRA World > > http://www.geocities.com/jraworld > > AJAO conference > > > > > From: " J. Miyake " <jmiyake@...> > > > > > > Our daughter has had psoriatic arthritis since she was one, she is now > > > 4. She has been on methotrexate for the last two and a half years with > > > no end in site. Over time my husband and I have been growing more and > > > more concerned about long term methotrexate usage. > > > > > > My daughter's rheumy suggested that our family might want to consider > > > going to this years AJAO Conference. I think our questions tend to be > > > more than can be handled in an office visit. I think the conference > > > would give us the opportunity learn more and meet other families. But, > > > I'm concerned about the expense. > > > > > > We live in the pacific northwest, this years conference is in Disney > > > World, Florida. > > > > > > Have other people gone? What did you think of the quality of the > > > presentations? Are the medical presenters really open to being > > > questioned by parents? > > > > > > Thanks for your input, Joanna. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2000 Report Share Posted March 26, 2000 Hi , Yea!!! That sounds great, putting up a section about it on your site. Please remind us all to come visit, so we can read about it! Thanks, Georgina jraworld wrote: > > From: " jraworld " <jraworld@...> > > Georgina > > If I do end making it to the conference I will be doing a specail section on > my website on it. Also next year there is one in seattle that I have been > told about. > > JRA World > http://www.jraworld.com > Re: AJAO conference > > > From: Georgina <gmckin@...> > > > > Oh, I wish these conferences were closer to home! I hope those of you > > who are able to attend will share news of some of the topics discussed > > and let the rest of us know how it was. Sounds like a great event. > > > > ~Georgina > > > > wrote: > > > > > AJ, > > > Our whole family is going to the conference this year. We'll just stay a > > > couple of extra days so that the kids can enjoy Disney as well. Are you > > > going? > > > Liz > > > > > > ajaomom@... wrote: > > > > > > Liz, > > > > Are you going to Disney??? AJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2001 Report Share Posted July 12, 2001 Holly, and I will be going :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2001 Report Share Posted July 13, 2001 Not this year faces1999, maybe next year if the tooth fairy comes through for me and leaves a little something, under my pillow! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.