PATIENT SUMMIT at the World Congress of Lymphology!!

floaton

Carol, I hope you're able to get a copy of that list, I'd be really interested to see it! Hope you have a great day again tomorrow , and thanks for the update!

AmyQ

Drugs for LE? This is the first I've ever heard of this...please, do tell.

Amy

glennie19

oooo, Carol,, I am a pharmacist in real life! I can't wait to hear what these meds and supplements are!!

Thanks for reporting in,,, can't wait to hear more!!

annbw

Carol, I have seen your posts for a while now. Thank you for sharing this wealth of information that you have access to by attending! I was not able to attend. I am very seriously considering surgery and would love to hear more information about that panel discussion. I am considering LNT and am wondering what the discussions were about the safety of the donor site. I am seeing Dr. Chang in Chicago and he always harvests from the clavical (neck) as he feels this is lowest risk but I know other surgeons do it with reverse mapping in other areas of the body. I'd be super interested to see if there is any objection by other surgeons as to the safety of the neck as a donor region. Is there a way for member on this site to email each other directly? I am wondering if I could email you directly at some point? Nevertheless, thanks for any info you provide when you get time!

glennie19

annbw: you can send Carol a private message (PM) where the two of you can communicate directly thru this forum. Only the 2 of you will be able to see the message. Click on Carol's name and then you will see a button that says Send Member a Private Message

carol57

annbw, I sent you a PM.

--Carol

carol57

Finally, I have finished writing up my notes from the WCOL. Here's a link:

https://www.dropbox.com/s/l3ymqvawn3n6edh/Carol%27...

I injected my opinions in a few spots, so please keep in mind that my opinions are just that...my opinions. Mostly, I tried to recount what I heard the speakers say, and as I reviewed and revised my cryptic notes taken in speed-typing mode at the conference, I reviewed the speakers' submitted abstracts to make sure my notes were accurate.

The many concurrent sessions meant that I saw only about a third of what was on the agenda. I'm very glad I was able to attend. Lots to learn!

AussieElaine

Carol, what can I say..you are a truly amazing lady and thank you so much for all your hard work and sharing this with us

carol57

My pleasure, Elaine. I get so frustrated by the huge brick wall between patients and the scientists, surgeons, and physicians who are moving lymphology forward. I wish NLN here in the States was more patient-centered. The patient summit at the recent conference was good, but lots of those attending wished they could listen to the scientific presentations, too. I felt fortunate to have that opportunity and to be able to put on paper what I was hearing. I'm glad to share and just wish I could have cloned myself and could have attended all of the concurrent sessions.

AmyQ

Hi Carol,

Thank you for taking such great notes and summarizing here. Did I read earlier in this post that there were some medications being tested or actually being used to treat LE? Maybe I missed it in your summary.

Amy

carol57

Amy,

At the patient summit, Dr. Karen Herbst (M.D.) gave a great presentation about lipedema, a condition that can coincide with lymphedema. In her medical practice, she focuses on helping patients with lipedema, which is I believe even less understood by the general medical community than LE. Lipedema is characterized by the accumulation of fat, typically but not exclusively on the legs, and generally not the feet. Fat accumulation from lipedema does not respond to calorie restriction or to any other weight-reduction method. Individuals with lipedema often to develop LE as well, which I believe I understood is the result of all the heavy lipidemic fat applying pressure to the lymphatics.

The reason I've just typed that what-is-lipedema summary is so I can put Dr. Herbst's comments about drugs and dietary supplements in context of her overall presentation. She gave a verbal run-down of drugs that she prescribes for her lipedema patients, as well as some supplements, with some comments about the nature of some of them and why she believes them to be beneficial. After she finished her presentation, someone in the room --a patient-- asked Dr. Herbst if any of the drugs and supplements also help for lymphedema. She gave a response that almost seemed like, 'why not?' And she then moved on to another question and never clarified or elaborated on any of the drugs/supplements' applicability specifically to LE.

When I returned home, I got in touch with a physician friend who has LE, and with a pharmacist who also has LE. I shared the names of the drugs and supplements with both, and some of the items struck the physician as questionable, in that they bring recognized risks and no obvious LE benefit. The pharmacist found some of the drugs interesting, but she had not seen them used for LE.

So, I opted to exclude the names of the drugs and supplements from my notes being posted online. BUT, I do plan to write to Dr. Herbst and ask her if she will write me an article or some kind of note to explain what she sees as the risks and benefits of the drugs and supplements. She is much beloved by lipedema patients, who find her to be caring and a tremendous advocate for patients with a disease that most people confuse with obesity and all the judgment that inevitably follows. I'm hoping that she will think about the value of presenting her professional interpretation -- with both risks and benefits--to an audience of patients, instead of just providing a list of names. I think she will respond favorably.

In the meantime, you can google Dr. Herbst, as she has a website on which she does give names of drugs and supplements she uses in her practice. We should keep in mind, though, that her patients' primary condition is lipedema, not LE. Until I see or read a discussion of the drugs/supplements and how they operate for LE, ideally with some documentation of why professionals think so...I'm being cautious about posting names here or anywhere else.