Who plans to attend these events?

[whatthewhat]

I plan on going to this one: Juvenile Arthritis National Conference

[Marci]

Hi Everyone, I haven't posted in sometime but I have been reading. Been lots going on at home. We are remodeling our kitchen and hubby does the work himself so lots of decisions and trips to home improvement stores. Gives him something to keep busy. We also had a scare that he could have cancer. He went to see his PCP because of digestive problems after he eats. PCP thought might be gallbadder so sent him for ultrasound and they saw something they didn't like so sent him to urologist (this concerned us). Sent him for Cat Scan and luckily it showed nothing wrong. Boy, were we relieved. He see the gastro doc this next week but we both feel everything will be okay. As I've mentioned in the past this last 12 to 18 months have not been the best for our family. Daughter dx with acute T cell lymphoblastic lymphoma in Feb 12 and son dx with thyroid cancer in May and me dx with WG in Dec. We did not need one more thing. Daughter and son are both doing great now. I'm doing good. Taking my MTX and now weaning off pred. At 40 mg today for next week. Doc wants me to get down to 20mg and then will discuss. Having no pain but do feel a bit spacey. Not sure if it's the MTX or the weaning. Nothing that stops me.

My husband and I went to the meeting in Cleveland on April 30th. He did this for me because there is nothing he hates more than listening to four hours of presentations. It was good for him though, because I think now he has a better understanding of what I really face dealing with my GPA. Plus during the break he got really good cookie. I did not take notes so my comments will be from memory and not technical.

We were welcomed by Ed Becker of the VF Board of Directors. The idea for this symposium was Dr. Carol Langford of the Cleveland Clinic because she thought that the patients, family and friends needed this education forum so update us on what's going on. All the power point presentations were good and it was good for them to go over what the cells look like when they are inflammed. Also had good pictures of the rashes people get. It it great that the VF is out there educating and raising money for research of our diseases. They introduced a couple doctors that they had given grants for research.

Dr. Langford talked next and went over the differnet types of vasculitis and how do they tell them apart. I found this interesting that lots of things are siimilar but there may be that one or two symptom that makes the difference when they are diagnosing. She also went over why the changes to the new names and stated that they may make changes in the future as they learn more.

Dr Carmen Gota spoke next about small vessel vasculitis. Alot of what she talked about I already knew from reading this forum. This place is a Fort Knox of information. Someone asked about trying a new med and the doctors all seem to think that if what you are on now is working stay with that.


Dr Damonn Molly from St Vincent's University Hospital, Dublin, Irleand spoke next. Loved his accent! He spoke about the large vessel vasculitis. Since I didn't know much about these I found it interesting. They all talked about how difficult it is to get the correct dx. The patients history with all their symptoms is very inportant. We also need to make sure that we tell our doctors about ANY new symptom.

After the break Dr ATul Khasnis talked about the other vasculitis diseases. Boy each one has their own struggles. I hope they all have forum sites like this one where they can get support and helpful info. I kept sitting there thinking we are truly blessed to have this place.


Dr Ful Hajj-Ali then discussed the neurological manifestations of vasculitis. Wow, when they talked about trying to determine if it's in your brain I could not get over all the tests they stated needed to be done before they could actually say it was vasculitis that was causing the problems. I kept thinking I wondered how many of the test the insurance companies didn't think were necessary. All these talks made it even more clear that we need to make sure that our doctors know our disease. Too much chance of missing that what we have is a vasculitis disease and that the right treatment needs to be started as soon as possible and that we need to be monitored closely.


They all stressed eating a good healthy diet and as all doctors always say we need to excercise. Can't seem to get away from that. It's impotant to keep our muscles as strong as possible since our meds like to make them weak.

Dr. Langford lastly talked about the ongoing reseach efforts. They are working on a test that will help them catch flares as they are just starting so we can get them under control as soon as possible.

I enjoyed the meeting and was glad I went. I was especially impressed with Dr. Langford. If I remember anything else I'll come back and add it.

[Psyborg]

Sounds like a food meeting for you. I'm relieved your husband isn't ill as well.

[annekat]

Thanks for that, Marci, and good to have you back.

[mishb]

Thanks Marci,
So great to hear it was a good meeting and you have also given us some interesting information.
I wish we had something like that over here

[sue7211]

My son and I will be going to Philadelphia. It will be great to see some of you there! We went in 2010 just after he had been diagnosed and it was really great for both of us. I learned the technical stuff and met some other patients. He me some older teens and young adults who taught him some of the social side of things. People attending were so nice and supportive and the doctors...who has one-on-one contact with all those experts in one place. It was really helpful to ask questions of them and get very meaningful answers. One of them told me to track down a doctor in France who had finished a study but not published it. I email him and he gave me the information and it changed the course of my son's treatment.

Sue

[marylz]

I'm thinking about going to the one in Philadelphia too...sort of depends on health at the time. How do we sign up, or do you just show up?

[lolsen]

Last year I was able to log on and "virtually attend" a few of the lectures it was a great service for me. Saved time and $. I once signed up to attend one near my home but it was canceled probably not enough people signed up.

[sue7211]

If you go to the Vasculitis Foundation website there is a place to sign up. I don't know if they are taking "walk-in" registration at the door. Call or email them to ask.

[pberggren1]

I'm thinking of attending the Symposium in Philly in July. Will have to see what else I have scheduled and how much flights are.