Complete decongestive physiotherapy with and without pneumatic compression for treatment of lipedema: a pilot study.

Lymphology. 2008 Mar

Szolnoky G, Borsos B, Bársony K, Balogh M, Kemény L.

Phlebolymphology and Wound Care Unit, Department of Dermatology and Allergology, University of Szeged, Hungary. szolnoky@mail.derma.szote.u-szeged.hu

Lipedema is a disproportional obesity for which evidence-based treatment is not currently available. We studied whether complete decongestive physiotherapy (CDP) alone or combined with intermittent pneumatic compression (IPC) could improve the treatment outcome in women with lipedema using a prospective, randomized trial. Eleven patients received CDP (60 min) and thirteen CDP (30 min) plus IPC (30 min) once daily in a 5-day-course. Subsequent to drainage, all subjects received multilayered compression bandaging, physical exercise and skin care. Treatment efficacy was evaluated by limb volume reduction.

Both groups achieved significant reductions in mean lower extremity volume (p < 0.05). The addition of IPC is safe, although it provides no synergistic benefit to CDP in leg volume reduction under these study conditions.

PMID: 18581957 [PubMed - in process]

11th Annual Georgia Lymphedema Education & Awareness Program

See you there

Golden Rule for Online Groups

I love this little piece.  I had posted it on the lipedema group and use it in the other support groups we sponsor.

Golden Rule for Online Groups

Remember when you were really little and your mother told you to
treat others like you would like to be treated? That is the backbone
of group participation on the internet. Be nice! It's simple, yet
complicated, mostly because life is relative to surrounding
circumstances and not black and white. Also, it is very likely that
when you were little, there was no Internet to speak of so how could
you possibly learn about its etiquette. Learning cyber etiquette is a
lot like learning about another culture; in that, it is very possible
you are un-willingly offending people. Here are some basic rules to
follow:

1. Don't YELL:

If you walked into your friend's house and started screaming loudly,
chances are your friend would question your sanity and ask you to
leave. We feel the same way. But wait, how do you yell in a group?
BY DOING THIS, I AM TYPING IN ALL CAPS AND THE WEB TRANSLATION IS I
AM YELLING! When avid Web surfers see capital letters, it immediately
puts them on the defensive. No one wants to be yelled at, so you
should not yell either.

2. Don't troll:

Trolling can take many forms, but it basically means that you are
harassing other users. There are many types of trolls ranging from
mildly irritating to destructively irritating. Doing the latter is
likely to get you kicked out of your group.Trolling can also
constitute behavior that is so upsetting, it causes all member to be
silent or leave. You don't want to be harassed, so you should not
harass others either.

I would say the same applies to off list posting to other members.
If you disagree with something they said, the last thing that you
need to do is to harass them privately or to send them a cruel and
unkind note. if I get wind of this, I will have no choice but to ban
you from the group as well. We are here to help one another, not
cause more harm.

3. Don't ever spam:

Spamming will result in fast removal.

4. Use accurate subject lines:

Ask yourself, is what I am saying reflective to the subject line? If
not change the subject line to your topic. don't use old subject
lines to post new topics, some people delete a topic if they are not
interested, they will never see your message.

5. Do not send chain mails:

Nobody likes them and wants to forward them on and on and on.

6. Do not forward list mail without permission from the owner or co-
owners this is important as this could generate spam for the group
that the filters might not catch.

7. Be polite and respectful when posting:

Think to yourself is that what I want to say or could I say it
better? Example: "You were wrong, you got your facts mixed up and
nobody believes you" couldn't that be better said to not put people
on the defensive? How about "I thought I saw something differently,
what is the source of your facts so we can better understand what you
posted" Words can display an undertone that people can mistake for
hostility.

8. Be respectful of others privacy when considering writing them off
list. Only do so if they have specifically said that it is ok.

9. Part of having lymphedema or lipedema or any medicaly condition is
that frustration and anger can build up in us. But, please remember
that everyone here is in the same boat and taking our anger out at
other group members is destructive both to the group and to ourselves
individually. So be kind and remember others have/do hurt as you do.

10. Always...always remember "The Golden Rule": Do unto others as you
would have them do unto you.

Our Yahoo Lipedema Group

Our Yahoo Lipedema Group

Sunday, July 13, 2008

Once again, I have decided to take a sabbatical from our Yahoo Lipedema group.  After a heated and unfortunately personal discussion, I decided that I simply have to take time off.  My health struggles involve two basic concepts.  These are (1) how do I stay alive awhile longer and (2) how cn I enjoy some type of quality.  Physically, I just don't have the energy to endure the type of rudeness that we all recently experienced.

But.....I very much do have some random thoughts regarding the group.  I warn you in advance, I am going to be fairly open here and what I will say may be offensive to some.

1.)  The group is NOT an obesity or a morbid obesity support group.  It was never intended to be so and that has been clearly stated.  The group focus is on a medical condition called lipedema and secondarily on lymphedema because all too often that condition accompanies lipedema.

I get very frustrated when obesity patients join and then try to turn the group into a obesity support group or a weight loss group.

2.) Along those lines, we have also time after time after time stated that clnically obesity/morbid obesity is a distinct medical condition apart from lipedema.  You can diet all you want, even starve yourself to death and that is NOT going to cure your lipedema.

3.) We have so many wonderful members with lipedema.  Actually, I really admire them and treasure their participation in our group.  They are really a great bunch!!!!!!!!

Ironically, it seems the arguments seem always to be started by those who join who are obese and/or morbidly obese and then get angry because they are challenged or questionned when they post notes on diets, and weight loss methods that are quite frankly dangerous and/or clinically proven to be ineffective. Some it seems have this "chip" on their shoulder and are always looking for a scrap.

4.) Having a medical condition is frustrating to say the least.  But, no matter how frustrated I may be, that does NOT give me the right to take it out on others.  If one feels they have that right, then I would rather they not be a part of the group.

5.) If you join a group with a clear focus, don't attempt to remake the group into what you choose to.  Really, it is very simple to go to your membership profile and hit the "delete membership" button.

6.) I wish beyond my ability to further explain how I wish people would read  my posts BEFORE they respond.  Read WHAT I say - not what you want to think I said.  Don't be so wrapped up in your response that you totally faily to grasp what I am posting.

7.) If you disagree with what I said, then please, simply present your clinical evidence otherwise.  Don't respond in "what you feel" - or "this is what I think."  Don't respond from emotion.  Provide medical scientific evidence to support your position.  I have never understood the need to personally attack someone you disagree with, call them names or otherwise.

8.) Always, always remember too that the right to post is a two way street.  If you have the right to post, then another has the right to respond. Free speech is a two way street.  If you don't want to be questionned, then you probably should not post.

9.) Understand what the definition of a support group is.  It is NOT a "yes" group.  If you care for someone, there are times when you must question what they do or post.  That is the real definition of compassionate help.  Where did this concept come from that a support group is one that says yes to any and every "cure" or "treatment" not matter how dangerous or scientifically invalid? That's really called indifference.

So that's pretty much it. 

I leave the group in the hands of our great moderators Jane and Helen.

Pat

The clinical spectrum of lymphatic disease.

The clinical spectrum of lymphatic disease.

Ann N Y Acad Sci. 2008

Radhakrishnan K, Rockson SG.

Division of Cardiovascular Medicine, Falk Cardiovascular Research Center, Stanford University School of Medicine, Stanford, CA 94306, USA.

In this review, we have attempted to provide a systematic overview of the subjective and objective spectrum of lymphatic disease, with consideration of all of the categories of disease that primarily or secondarily impair the functional integrity of the lymphatic system. Lymphedema is discussed, along with chromosomal disorders, lymphangioma, infectious diseases, lymphangioleiomyomatosis, lipedema, heritable genetic disorders, complex vascular malformations, protein-losing enteropathy, and intestinal lymphangiectasia.

Annals of the New York Academy of Sciences