Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Was any one able to attend the conference in Anaheim on May 17? The conference had some fascinating topics. Does anyone know if there is a DVD or transcript available? .
Also, do you know when the next conference is?
Thank you.
-Julie
Also, do you know when the next conference is?
Thank you.
-Julie
I went to the Anaheim conference, learned a little, not as much as I would have liked.
The IDF presenter was the absolute worst and I was ready to hang myself 10 mins into the conference. I did get a website to checkout: http://usidnet.org
1st speaker only spoke of SCID's and bone marrow transplants for children w/ SCID's- stated many times CVID not considered serious. And compared to SCID's he is correct, but I was not pleased with his constant dismissal of CVID being an illness that didn't warrant research or aggressive treatment.
2nd speaker- was ESL- hard to understand and only spoke of history of Immune system and current treatment- The only thing I learned from her is the lengthy process a plasma donor goes through b/4 they are approved to donate plasma.
3rd speaker- was awesome but mumbled at times and did not speak into microphone when explaining slides, he covered vaccines, but even though the question should you get a Shingles vaccine and will it be effective posed, I left not having a definitive answer. This question was asked twice, same content with different verbiage and was answered with one "no" and one "depends"- but was not given the reason as to what it depends upon. He was in his his 80's, but someone you wanted to invite to your party. Would love for him to adopt me as his child as he would be a great dad.
Not feeling well enough to write more in length and have major joint and tendon pain.
Will send you my cell number in a PM, please feel free to call me if you would like to get more information.
Denise
I will expand a bit on Denise's review:
MY GF and I attended.
4 MD's with $2000 honoraria for speaking - could have been much much better.......
Summary : Compared to two years ago in Cerritos:
Venue was nice and lunch was excellent for a conference.
Travelling over 60 miles each way ( get up at 5:30 am on a Saturday to get there...)
Vendors - not nearly as many - there were empty tables.
Some were nice - BioFusion and Acredo ??
My observation
Baxter and Walgreens - fail:
The Baxter rep - tall guy was very standoffish and not helpful.
The Walgreens rep ( R.N.) got into a bit of a push back when I'm giving her real feedback about patient RX fulfillment errors and service..
Really - I DON'T need to be the one to train your staff - you shouldn't mess up to begin with.... type of stuff.
Speakers:
The IDF person was nice - but my GF actually leaned over and said, " stick me with a knife...." I guess she's not the regular speaker....
I was the one that spoke about getting your MD on USIDNet....
The first speaker was interesting - but not useful at all. Bone marrow transplants on infants has no usefulness to most of the adult attendees...
The "ESL" speaker - is some Director at Baxter and professor Emeritus at UCI ? - She was very knowledgeable... I understood her but my GF almost couldn't - guess I'm used to scientists and engineers with accents. I spoke to her briefly afterwards and she was very nice.....and you could tell absolutely brilliant...
BTW Baxter uses contract workers to scrub the plant like crazy for $10 an hour... - my GF's brother got laid off from there the day before the conference - so I had to keep my GF from going over and giving them a piece of her mind...
Here's the problem: She answered questions so very precisely to avoid potential liability.. so essentially asking her questions really produced little or no enlightenment - if you understood how she was very narrowly interpreting the questions..
The third speaker has I think been there before - he's funny and talking about vaccinations was useful to a degree....agreed he would be a great extra dad...
The after lunch speaker about Obamacare was USELESS.
There was no information presented that you couldn't find out in 5 minutes of researching Obamacare...
Overall we both came away saying - we gave up our Saturday and traveled over 100 miles - we got some face time with a couple of other patients and families... that was golden - the rest was not as informative as 2 years ago....
I just got a great overview & saved $$$$$ and my precious spoons..
Thanks ladies..
Hugs
Cheryl
However, I too would feel offended that he doesn't feel that CVID is very serious. When I saw the agenda I was hoping that perhaps they were doing bone marrow transplants for CVID or at least researching various aggressive treatments.
Thanks again.
-julie
Thank you for expanding on my very short, not all that happy I woke up at 6:30am to attend summary. And thank you for the information you gave, that literally was the only note I took.
You made my day and I needed a good chuckle, I would have loved your friend to stick the fork in me while she was speaking. I thought I was being unrealistically critical and disappointed in Saturday's Conference.
I drove about 32 miles each way, I live in Hermosa Beach which is 7 miles south of LAX. The smog and residual from the SD fires were harsh on my lungs. Living by the beach, I do not get the smog or the heat like inland does.
I hit a few booths as lunch was about to be served and then left and treated my GF to lunch at Tu Tu Tango (which is one of my favorite restaurants) as a thank you for dragging her there when she works 60+ hours during the week. I had no interest in the Insurance portion as I am very knowledgeable in that area, but would have liked to participate in the group patient discussion, but felt I put my friend through enough and it would be unfair to put her through additional time at the conference.
I had wanted to meet local peeps and although the couple I sat next to were great and lived in Long Beach, they came for their child which is different from being a patient.
As far as booths, I stopped by Accredo and Hizentra (which is my IgG brand) and they were great. The South bay is the Hizentra Sales guy, so he is going to meet my new doctor at South Bay Allergy and Asthma and knows my old doctor.
I did not stop by Baxter since I had been on Gammagard for almost 1 1/2 yrs and had severe side effects that never subsided. I liked the guys at Coram/CVS and hopefully, will help his wife with career coaching and resume writing.
I have a "self absorb, if it doesn't benefit me, i will not bother" 1st generation Italian/American father who has never once wished me a Happy Birthday even though his birthday is a week to the day before mine and I celebrated his in every way and has never hugged me once when I cried. Although, he did beat me once when I was on my bed crying after he jumped on me and pinned me down. I was serious when I stated, I wanted the nice funny doctor to be my dad.
You can see the back of my head in the attached picture from the IDF website. We are the corner table at the lower right side of the picture. My girlfriend is behind me, blond hair wearing blue, I am wearing black w/ the ponytail, which has been my preferred hairstyle for the last 4 years.....
http://twitpic.com/e425u6
I was very disappointed and would have been beyond fuming if I took a long trip that required an overnight stay. You did not miss anything......
I think I used all spoons stored and the spoons I would be getting for the rest of 2014. I'm still trying to recover and have a set back with my ear infection, fatigue and pain due to the long day. I wish I had gone to Disneyland...... at least the recovery would have been worth it....... LOL!
Two of the doctors came from UCLA and one came from UC Irvine, these are world renowned medical universities and up there with Baylor. If I didn't mind the 1 hour and 15 min drive to go 15 miles to UCLA, I would be going there in a heartbeat for an Immunologist.
The topics missed the boat and they were not thorough at all. Autoimmune diseases was not covered at all.
The only thing I really learned was the lengthy process it took to get approved for Plasma donation.
I think I was the guy that came up to the Hizentra booth while you were talking about your MD's...
I should have rewarded my GF with Disnelyland while we were there .. you should have heard a full grown woman with a graduate degree turn into a 4 year old when she realized we were across the street, and not going there... Lol
We had a Brithday party to attend that night.
I feel really really bad -
I love the IDF - this took a lot of effort to get a conference room and speakers...
Spending 8 thousand dollars ( assuming 4 honorariums @ 2K earch) on 4 speakers plus the room and meal was seriously not lost on me as to the great help the IDF and its sponsors have been.
Two years ago was much much much more informative....
I would have like to see more LA and OC doctors just in attendance -
I wonder - Dr Church from USC was there a couple years ago...
Maybe a wider panel of docs - to ask each other and us questions....
My MD practice alone has 5 MD's treating PIDD type patients....
I don't know how many Doctors offices and patients got told about this event - but I know my Dr office - thus the patients knew nothing about it...
Sounds like yours was excellent:
Seeing a mental heath professional involved would have excited my GF as she's in the same field.
It's odd - I feel like I've run into this in LA - nobody realizes....
There's only 12 million people in LA,OC - how hard is it to get a good set of speakers.....
I think I know who you are. I believe you were sitting at the table just in front and to the right at my table. I now remember you giving the website information when the IDF speaker kept saying if you look at the slide, you'll see the information. Since I could not see the slide since I sat in the back, her telling me to look at it was useless. I believe your back is also in the picture I attached previously.
When he asked if I was going to Dr. ________ I told him she was the doctor that diagnosed me, but dumped me while I was battling pneumonia because I could not afford a hospital stay since I had no medical insurance at the time. And she stopped signing for IgG therapy so I had my OBGYN sign the prescription for 5 mths until I qualified for PCIP and could find a new Immunologist.
If that is the story you heard, that's me!
I am So. Cal born and bred and have been to Disneyland 100's of times, many great times and memories, now I look at the park as one big pool of germs...... My niece and nephew have season passes, I need to get my Immune System strong enough to one day join them. Although, ticket prices just went up to $96 and that is w/o the park hopper- I think I would need to sell an organ to pay for admittance.
We save a lot when we go, we NEVER eat inside, always go back to the hotel for PB&J & water & juice..we used to take our own water with us, not sure they let you do that any more..
If I went to to the conference I probably would have stuck my head in the door & wondered across the street..lol
I would have grabbed you Denise and you wouldn't have been bored...at least we could have done down town Disney ..
HUGS..
While I can't imagine what it must be like to have attended better conferences or had personal experiences with IVIG, doctors, etc with which to reference for rating one's experience.
I honestly appreciated the conference, and though it could have been better, I was grateful that it was free (minus parking and gas) and some of the booth reps gave me great advice about getting financial assistance for subQ infusion.
-The IDF presenter was quite boring
-The first presenter was insightful for me, because I had wondered about gene therapy and bone marrow transplant options for CVID. I didn't get the impression that he disregarded CVID... he mainly said that, because of the risks, bone marrow transplant is generally reserved for patients with fatal illness like SCID and cancer-related illness. I assume that, because we are able to maintain a certain level of functioning with IVIG, the transplant just isn't recommended. The panel of doctors only knew of a couple CVID patients who have had the procedure done, so I assume that just don't know how effective it is of us at this point.
-The second presenter had a very thick accent, which made her very hard to understand, but I feel like I was able to follow her. She mainly discussed IVIG therapy, which wasn't as interesting to me, because I had already done my own research. I think it would have been helpful for someone that was completely new to IVIG therapy.
-The third presenter WAS quite old:) .... though I found his information to be very helpful. He discussed the importance of family members getting certain vaccines and avoiding others to support patients with CVID. He confirmed that getting live vaccines is a bad idea for us, but suggested that be do get flu shots, not to develop antibodies, but to boost our T-cell activity during flu season.
-The Q&A panel was probably only as informative as one's questions were relevant. I only had one question that was answered well, and the remainder of questions covered were, either of no interest to me, or I already knew the answer.
-I left after that, to drive home. Not sure about the patient-to-patient activity.
All that, to say that I DID appreciate the conference. I could imagine that others (family members, etc) may have found it even more helpful depending on where they were on the spectrum of experience/knowledge. It did seem ridiculous that the doctors were paid so much to give a 30 min presentation and Q&A on simple matters.
I had absolutely no expectations when I registered for the event, so I was pleased to get SOMETHING out of it, even if it wasn't stellar.
If you have any specific questions, let me know:)