Sunday, January 01, 2006

Lymphedema 2006

The new year 2006 has dawned and the old year is gone forever, nothing now but a memory. I hope everyone can look back and feel they did their very best without regrets and "what if's."

I am excited about the possibilities that lay ahead for all those with lymphedema, lipedema, lymphangiectasia and other related lymphatic conditions.

It promises to be a busy and progressive year for research into the causes and hopefully the cures of our conditions.

Some of the cutting edge research involves:

1. Tissue engineering to construct functional lymphatic tissue

2. Adipogenisis (how fat cells form) in lymphedema

3. The genetics of hereditary lymphedema and related syndromes

4. Study of the physiology of the lymphatic system - flow, pressure, valves, contractibility

5. Study of lymphangiogensis (how the lymph system forms) and how to use that to treat and cure lymphatic conditions

6. Study of the embryonic origina and development of the lymphatic system

7. Study of angiogenisis (blood vessel formation)

8. Further understanding of the role played by lymphatics in cancer

And perhaps the most important is an increased awareness and interest in understanding just how important the lymphatic system is to all other body systems and the major role it plays in our over health and other serious medical conditions.

Other important milestones for the furtherment of lymphatic research includes:

1. The Lymphatic Research Foundation recently introduced a LE Research Fellowship Awards Program

2. A renewed and ever increasing support from the National Institutes of Health

So with all that is going on to research, treat and cure lymphatic conditions, where does all this leave us as patients in 2006 in terms of our own personal lives?

If I could only say one thing, it would be "Make 2006 Count!" I hope we can all come to the point where we say, "I have lymphedema" not "Lymphedema has me."

I want to share some tips that have helped me. But, before I do, I also don't want anyone sitting there thinking "this guy just doesn't understand what it is like to have lymphedema," because the reality is that I do understand. I have never had a day without this condition and have had to face almost an unbelievable array of complications, including lymphatic cancer, from it. I understand how painful lymphedema can be physically and understand completely how devestating it can be emotionally.

Make 2006 Count

Take charge of your life

Resolve that you will not be the person who just reacts to what lymphedema does to you. Become proactive in managing lymphedema and in creating a life that has quality and meaning.

Be diligent in selfcare

Follow to the letter the requirements of your treatment with the therapists. Work with them, not against them. Be meticulus in skin care, bandaging, diet and all the other aspects of managment that will help control your condition.

Get your eyes off yourself

Reach out and help others. Decide to be a positive and healing force with other people. This is not just a quaint cliche for me, but I do honestly believe that there are worse things you can have then lymphedema and there are so many desperately sick and hurting people all around me that I wouldn't trade places with for even a second.

Dump selfpity

Sure, having lymphedema is the pits, but selfpity is one of the most destructive mind frameworks we can ever get into. It has healed no one, cured nothing and accomplished zero. What it does do is destroys you inside, makes you miserable and eventually you wind up thinking crawling away into a lonely black hole. Hmmm....that sounds like an exciting way to life, doesn't it?

Discover new interests

If lymphedema prevents you from doing an activity that you love, learn a new hobby or discover a new interest. Don't just dwell on your loss of ability, be determined that lymphedema is not going to make you stop doings things and enjoying life.

Educate yourself about your condition

Care enough about your well being to take the time to study and learn credible information about lymphedema. Don't just wait for someone to tell you about it, take the initiative to learn.

Get Involved

There is a new and growing interest in advocacy for lymphatic conditons. I want to encourage you to suppport and be active in the efforts of groups like the Lymphedema Stakeholders.

Be involved in helping pass legislation right in the state you live in that will assure proper diagnosis and treatment.

Challenging the Myths

One other major change going on in the lymphatic world is a movement to question and debunk some of the myths that we have come to accept over the last couple decades.

Myth One - You can not be active with lymphedema.

I was so totally shocked when I came online to the cyber lymphedema world to see just how many of us were afraid to do any type of physical activity. "Oh, that's terrible or dangerous, it is going to make the lymphedema wors," we were told. I for one am glad to see this myth challenged and gotten rid off. It is a simple medical fact that exercise and activity are crucial to our our all mental and physical health. Not to mention that fact the exercise helps move fluids out of our bodies.

Myth Two - You really can not know what the true facts are about lymphedema.

Someone actually said that to me recently. That told me two things about this person.

First, they didn't care enough about themselves to try to learn.

Secondly, they have just surrendered to what they consider the proper "hopelessness" of lymphedema.

The problem isn't that there is a lack of credible information out there. The problem is that there is so much misinformation being presented. Everyone has their own clinically unproven concept of treatments, complications, diets, medicines etc...and even some lymphedema sites themselves are guilty of providing faulty information.

Go to websites that have proven their dependability. Some of these include The Lymphatic Research Foundation, Lymphovenous Canada, Lymphoedema Association of Australia, The Vodder School of Therapy, Pub Med and the National Lymphedema Network.

When you do research, visit the online libraries of medical schools, search out online medical journals. These all have solid information.

When someone says they know of a treatment, a herb, a technique...ask them for evidence, demand independent clinical studies that prove their claims.

Don't just believe what someone says or what you see written on a website.

Let's look forward to 2006 with expectations.....hopes for treatment and a cure.....hopes for a better life, right where we are.....


Life is meant to be a celebration of what we can do...not a requiem for what we can not.

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