PATIENT SUMMIT at the World Congress of Lymphology!!

Binney4 · January 2015

Start planning now for this event September 8 and 9 in San Francisco, co-sponsored by the International Society of Lymphology and the National Lymphedema Network. Here's an opportunity for patients to learn more about lymphedema: all the latest in treatments, research, new products. Rub shoulders with lymphologists and lymphedema researchers from around the world, listen to lectures tailored to patient interests, and participate in workshops on a variety of subjects. Best of all, you'll be able to visit the Exhibit Hall of lymphedema products--booths set up by all the players in this growing field. See, feel, and experience all the garments, talk to the designers and manufacturers, pick up ideas and share your needs with them as well. Meet up with others from this forum who will be attending, and make new friends with lymphers from all over.

More information here:

http://www.lymphology2015.com/program/patient_summ…

GO FOR IT!

Binney

cowgal · January 2015

Thanks for posting!

glennie19 · January 2015

oooo,, I want to see if I can go to this!

glennie19 · January 2015

Here's another mention of it. http://www.lymphnet.org/events/25th-world-congress-of-lymphology

glennie19 · January 2015

and the agenda: http://www.lymphology2015.com/program/patient_summit_agenda

carol57 · January 2015

I am planning to go, and I would love to meet up with friends from our LE forum here, if any of you will be there

glennie19 · January 2015

I hope to be there!! And I would love to meet any of the "swell sisters" who are going.

carol57 · January 2015

Glennie, that would be great

glennie19 · January 2015

it's a long dang flight from Florida!! But it sounds like it would be so interesting.

SusanSnowFlake · January 2015

longer drive from Indiana. Could be interesting.

StrongEnough · January 2015

I would like to go. I feel so alone in all of this, so being with others would be terrific! And meeting with vendors could be very helpful. And if I could tell the presenters to please do enough research so that there would be some consistency in treatment recommendations, all the better! :-)

Nordy · February 2015

I will go if it works with my kids and school. Thank you a million times for posting.

glennie19 · February 2015

Excellent! I am hoping to meet some of the "swell sisters" at this conference!

gemmafromlondon · February 2015

Sadly a bit far for me. Just hope they take stock of all the pain they give women by procedures which turn out to have been unnecessary. Much more research is needed into the balance between information for information's sake and quality of life for those with bc.

hugz4u · February 2015

Oh my, I am so tempted and its on the west coast to. Got to get up the nerve to fly. I wonder if they have any one doing mld at the exhibitas i definitely would pay after coming off the flight.

carol57 · February 2015

OK ladies, I am all set! Registered, and DH and I are going to make a little trip of it, arriving a few days early for Labor Day weekend. Both he and I travel constantly for work, so we're lucky to have frequent flyer and frequent hotel-stay miles and points, and we decided to use up a wad of both to be able to do this trip. Travel is all booked and now, we wait!

As a seminar instructor, I fly a lot. Knock wood, so long as I wear my sleeve/gauntlet, stay hydrated, and walk a lot before and between flights, I've never had a big problem. Worst outcome has been achiness for a few hours, but no big LE disasters (I probably should not be tempting fate by typing these words...). I hope many of our swell sisters will consider going to this conference, but I do understand that flying with LE can be spooky.

glennie19 · February 2015

Excellent, Carol! My BFF said,, hey I've never been to San Francisco,, so she is going to tag along. She will do tourist things on her own while I'm at the conference and then we will also extend the trip so that I have some sightseeing times too. I am very excited,,, although this will be my longest flight since developing LE,, so it's a tad scary!

carol57 · February 2015

Glennie, I'm looking forward to meeting you at the conference!

glennie19 · February 2015

Looking forward to meeting you too, Carol. I'm going to get registered this week. I looked at the registration form a little last night cuz I was curious to see how much it costs. You register as a "patient", right?

carol57 · February 2015

Glennie, I am an NLN - LSAP 'graduate' --Lymph Science Advocacy Program, meaning that a few years ago, I applied to go to the NLN's biannual research conference as a patient. Normally, only clinicians and researchers can go. I was accepted into the program in 2012 and the conference was an amazing experience. As an LSAP graduate, I can go to the full World Congress of Lymphology, which takes place simultaneously with the two patient days. I'll be going to the broader congress/conference, but also going to many of the patient sessions. Nurses, PTs, OTs, doctors, and I suspect, pharmacists, can attend the Congress and receive continuing ed credits for doing so. It's expensive, though. Luckily, the LSAP participants get a reduced rate, which makes it possible for me to go. The patient event is more reasonably priced, and that's included in my LSAP program rate.

glennie19 · May 2015

bumping

carol57 · May 2015

Is anyone here thinking of going? I want to be sure to meet up with anyone who goes.

glennie19 · May 2015

I'd like to go,,, hoping I can make it work.

Binney4 · May 2015

Check out the website--there are some partial scholarships available for those who need help paying for it.

Binney

glennie19 · August 2015

Well, I can't make it, but my LE therapist is going! Hoping she gets some good ideas about dealing with my truncal problem areas!

Jennie93 · August 2015

Oh, that would be wonderful!

kayezzy66 · September 2015

What is truncal lymphedema??? I have lymphedema in my right arm.In June my hand and arm and fingers started sweeling,and went and had a ultra sound..Thank god nothing,and took an antibotic.Went to therapist for 3 weeks ,every day to get wrapped...stopped to go away on vacation,but havent gone back,but im still swollen.I wear my sleeve in the daytime.Im so tired of this....Its just not fair to go through so much,and still have to deal with this.....Kay

glennie19 · September 2015

truncal LE is when you have swelling on the trunk of your body,,, in my case it is over my MX scar and in the armpit area.

kayezzy66 · September 2015

Thanks for the answer.....i get more answers here ,than i do at the Drs. or goggle....

glennie19 · September 2015

Looking forward to a report from our Carol!

carol57 · September 2015

I will post notes when I have time to catch my breath! It's been incredibly busy. Quick highlights--

There was an amazing panel discussion by six surgeons from around the world, each perforrms LE surgeries routinely. They discussed three case studies, and there was about zero consensus on the appropriate surgical approaches for those patients. The discussion got quite heated; there was a lot of eye rolling by various surgeons who disagreed with other surgeons' approaches. Despite all this, a lot of good information surfaced and I will try to summarize. There's another session on surgery tomorrow.

One LE physician gave a presentation to patients that included a huge laundry list of drugs and supplements she gives to her LE patients. I hope to get the full list--I couldn't copy these strange (to me) names fast enough--and then find pharmacist friends knowledgeable about LE to review and give a second opinion.

More later!
Carol

PATIENT SUMMIT at the World Congress of Lymphology!!

Comments

Categories