Sunday, October 30, 2005

Georgia Lymphedema Education and Awareness Day

We had our 8th annual State of Georgia Lymphedema Education and Awareness Day on Saturday, October 29th. It was truely an incredible program...I wish you all could have been there (maybe next year).

Our guest speaker was Dr. Kathleen Francis from New Jersey.

One of the nation's top lymphedema experts, she is also Director, Lymphedema Physician Services, P.C.
Clinical Director, Lymphedema Treatment Center at St Barnabas in Livingston, NJ.
Assistant Professor and NJ Medical School in Newark.

I must say stuffed shirt here...she was down to earth, had a great sense of humor and was really neat to be around.

The morning session was in Lymphedema Genetics and Research.

Perhaps, the most exciting news in research is that the lymphatic system is finally being recognized as the important body system it is and plays and important role in cancer, immunity and inflammatory disorders.

As such, through the NIH - which is the major funding body for research in the US, there is going to be a dramatic increase in funding available as researchers seek to understand its pivital role in these conditions.

Much of this is coming about as a result of the tireless effort of Wendy Chaite and the Lymphatic Research Foundation. This is way I'm always sharing about the LRF and urge everyone to support the foundation and its efforts.

Some of the cutting edge areas of research include:

1. Tissue engineering to construct functional lymphatic tissue

2. Genetic therapy through gene transfer

3. Use of VEGF-C exogenously (having been derived from outside the body and inject in - much like a medicine)

4. Increased understand of the actual physiology of the lymphatics.Other areas include research into lymphatic involvment in inflammation and the study of adipogenesis which the the formation of tissue containing fat.

From everything I have read, I have long been convinced that either a solid treatment is on the horizon and/or a cure will be discovered. It was encouraging to me to hear Dr. Francis say the same thing.

The after noon session involved basic managment and care concepts. A good reminder for us "oldies" and great info for newbies.

The part of that session I enjoyed the most was entitled"Challenging the Myths"

Many of the things we hear about shoulds and should nots involving lymphedema are actually based on theory and not clinical evidence. One of these long standing myths has been in relationship to exercise and lymphedema.There is finally a surge in interest on this and good clinical evaluation going on. What is being found is that far from being dangerous for lymphers, exercise can play a pivtal role in over all body and lymph health.

The lymph system has no "pump" like the cardiovascular system which has the heart. Lymph flows through muscle contraction and action. Therefore it would seem self evident that all of us need to be involved in some type of physical activity and exercise regime.

I'll be totally honest with you. Growing up in the so-called "dark ages" on the 1950s and 1960s, I grew up not hearing that lymphedema was this awful forbodding prison where you are chained to the couch and prohibited from being active.

As such, I was always doings things and on the go...very very active.I am convinced after close to 53 years of lymphedema this has greatly benefited me in several ways.

1.) Quality of life - Certainly, I have had to modified what I do, but I would be the first to say my quality of life has truely been great and I have been able to enjoy so many things (can you imagine what the Alps look like at 12000' level on the top of a mountain)

2.) Over all health. Despite decades of battling cellulitis, other lymphedema complications and for the last ten years over all health is still excellent. No blood pressure problems, no heart problems...the only reasons I have had to see a doctor in the last 30 years has been specifically for lymphedema related complications.

3.) Weight - I have never had a weight problem and I contribute much of this not only to diet but especially to remaining an active person.So the key here is to get of that duff and get into some type of exercise.

Of course use common sense, and if you haven't been on a program, talk it over with your doctor and therapist and design a program. Start of slow and work your way up. I wish so badly all of you could understand the absolute importance of this.

In closing I want to express my personal appreciation to the Lighthouse Lymphedema Network for sponsoring this event and special kudos to Dr. Francis. She took an incredibly complex topic like genetics and talked in a way that every single person in the audience could understand.

I will do post also on product review and advocacy issues.

1 comment:

bern982 said...

I ran a half marathon with lymphedema in my right leg. It was an amazing experience.