The Puzzle Lymphedema Book

The Puzzle Lymphedema Book

JUST A WEE REMINDER


Here's our new book on lymphedema. I also have a chapter with several articles.....

(including my own story). Pat

---------------------------------

The book is compiled so that people who have been touched by lymphedema can share their stories; their trials and tribulations, their sadness and disappointments, their strength and hopes. It is intended to encourage, educate and inspire patients and loved ones, who can often feel isolated and uninformed.
We hope to increase awareness and general knowledge of a condition that is often overlooked and misdiagnosed, yet which can have monumental physical and emotional impact on the lives that it affects.

Not every story has a happy ending, yet there is hope. By sharing these stories with one another, we can learn from the struggles and successes that others have
experienced, and can help each other to live well with lymphedema.

How do I get this book ???

This book will be available at:

15th State of Georgia Lymphedema Education And; Awareness Program 

15th State of Georgia Lymphedema Education & Awareness Conference

Saturday, October 27, 2012

Emory University Hospital Midtown, 550 Peachtree Street, Atlanta, GA 30308

7:30am-4:30pm 

Speakers include: Jane Armer, PhD, Richard Mistretta, DPM,

 Joseph Feldman, MD, and  David W. Chang, MD

The Conference Brochure may be viewed by clicking here

  You may register online by clicking here.  To register by mail simply print the conference brochure and fill in the required information.  Print the Conference Brochure here.

Lighthouse Lymphedema Network Store

Book descrption

ALSO: We have a cookbook with recipes from members and friends:

LLN Favorite Recipes

Please mail your completed order form and donation to:

Lighthouse Lymphedema Network Book
10240 Crescent Ridge Drive
Roswell, GA 30076

Please send a donation of :
$19.95 per copy
Plus $5.00 per copy for Shipping Costs

Order Form

Name: Last First___________________________________________________

Mailing Address____________________________________________________

City State ZIP Code_________________________________________________

Home Telephone Number Cell Telephone Number________________________

Email Address_____________________________________________________

Number of Copies you would like to order______________________________

$_______________________________________________________________

Amount Enclosed________________________

The Puzzle - An Inside Glimpse of Lymphedema - New Book

The Puzzle - An Inside Glimpse of Lymphedema - New Book

by The Lighthouse Lymphedema Network

The book is compiled so that people who have been touched by lymphedema can share their stories; their trials and tribulations, their sadness and disappointments, their strength and hopes. It is intended to encourage, educate and inspire patients and loved ones, who can often feel isolated and uninformed. We hope to increase awareness and general knowledge of a condition that is often overlooked and misdiagnosed, yet which can have monumental physical and emotional impact on the lives that it affects.

Not every story has a happy ending, yet there is hope. By sharing these stories with one another, we can learn from the struggles and successes that others have experienced, and can help each other to live well with lymphedema.

How do I get this book ???

The book is available:

Lighthouse Lymphedema Network Book

10240 Crescent Ridge Drive

Roswell, GA 30076

on the new Lighthouse Lymphedema Network Store

http://lighthouselymphedema.org/LLNStore/Storewelcome.htm

Remember: All profits are going straight into our "Bag Fund" that assists needy lymphedema patients in securing desperately needed compression garments.

Included in the book are four articles by Pat O'Connor

The Puzzle - An Inside Glimpse of Lymphedema - New Book

Here's our new book on lymphedema. I also have a chapter with several articles.....

(including my own story). Pat

-------------------------------------------------------------------

The book is compiled so that people who have been touched by lymphedema can
share their stories; their trials and tribulations, their sadness and
disappointments, their strength and hopes. It is intended to encourage, educate
and inspire patients and loved ones, who can often feel isolated and uninformed.
We hope to increase awareness and general knowledge of a condition that is often
overlooked and misdiagnosed, yet which can have monumental physical and
emotional impact on the lives that it affects.

Not every story has a happy ending, yet there is hope. By sharing these stories
with one another, we can learn from the struggles and successes that others have
experienced, and can help each other to live well with lymphedema.

How do I get this book ???

This book will be available at:

14th State of Georgia Lymphedema Education & Awareness Program14th Program

OR FROM:

Beverly Thompson 770-476-2671
HILTON GARDEN INN — ATLANTA PERIMETER CENTER
1501 Lake Hearn Drive, Atlanta, GA 30319
Saturday, October 15, 2011
7:30 am - 5:00 pm

The book will be available at any sponsored Lighthouse Lymphedema Network
program or conference for a donation of $15.00
Lighthouse

Please mail your completed order form and donation to:

Lighthouse Lymphedema Network Book
10240 Crescent Ridge Drive
Roswell, GA 30076

Please send a donation of :
$19.95 per copy
Plus $5.00 per copy for Shipping Costs

Order Form

Name: Last First___________________________________________________

Mailing Address____________________________________________________

City State ZIP Code_________________________________________________

Home Telephone Number Cell Telephone Number________________________

Email Address_____________________________________________________

Number of Copies you would like to order______________________________

$_______________________________________________________________

Amount Enclosed__________________________________________________

Lighthouse Lymphedema Network

I wanted to make a special announcement that the Lighthouse Lymphedema.Network is now on Facebook.

.

You can join by going to:

.

Lighthouse Facebook

.

.

There is also an area where you can post and participate. AND - don't forget our upcoming program in October.

.

We will be having both a parenting network and a teen network this year....be there or be square!

.

see the details for that at:

Lighthouse Lymphedema Network

.

**yes, I'm on it too :-)

.

Pat

Lymphedema sufferers must cope for a lifetime

Lymphedema sufferers must cope for a lifetime

BY BORDEN BLACK --

Special to the Ledger-Enquirer (Columbus, Georgia)
Tuesday Oct. 30, 2007

------

Lymphedema is one of those little-known conditions that doesn't spark telethons or poster children. It is life-altering, however, and can dictate lifestyle. I should know. I've had lymphedema since the lymph nodes in my legs were removed following cancer surgery.

About lymphedema

The lymph system has been described as the sewage system of the body. Waste products, bacteria, dead cells and large protein molecules are transported in lymph from tissue to the nodes where they are broken down and eliminated. When the system is broken, abnormal accumulation of protein-rich fluid can accumulate, usually in an arm or leg. This results in swelling in the limb and thickening of the skin known as lymphedema. The condition can be painful and disfiguring and can result in infections, depression and decreased mobility.
While primary lymphedema occurs at birth, secondary lymphedema is the result of damage to the lymphatic system. It is the most common form of lymphedema, and frequently occurs in cancer patients. Dr. Kathleen Francis, Medical Director of the Barnabas Lymphedema Treatment Center in Livingston, N.J., points out that if the lymph nodes in the armpit area are removed or radiated as a result of breast cancer treatment, it can lead to lymphedema.

She was among the doctors, therapists and patients who gathered in Atlanta recently for a conference sponsored by the Lighthouse Lymphedema Network. The nonprofit support organization was formed by Joan White, who developed the condition as the result of appendicitis. The idea for the organization grew from a discussion around her kitchen table in 1994. She points out that quality of life is a huge issue for those with the condition, many of whom have survived cancer only to find that they must continue to spend a great deal of time and energy dealing with the resulting lymphedema. The need for support, advice and awareness led to formation of the network.

The problems

Dr. Paula Steward, Medical Director of Lakeshore HealthSouth Rehabilitation Hospital in Birmingham, Ala., explained the problem faced by those suffering from lymphedema by quoting Dr. Robert Lerner: "In the past physicians played down the importance of lymphedema and pointed out that it is rare, that there is no effective treatment and that the patient must learn to live with it... . They have failed to instruct patients on how to avoid lymphedema... and continue to grossly understate the incidence of this serious and lifelong illness." She points out that correct diagnosis is essential in providing effective treatment.

Several other conditions, including inflammatory arthritis and post-phlebitic syndrome, have similar symptoms so accurate tests are needed for proper diagnosis. Currently, ultrasound, magnetic resonance imaging and computed tomography (CT) are used, but a diagnostic tool being employed in Europe is seen as the best option. Dr. Waldemar Olszewski, a world renowned expert in lymphedema, came from the Polish Academy of Science Hospital in Warsaw to discuss with conference attendees isotopic lymphoscintigraphy. The procedure has yet to be approved for use in America, but according to Olszewski: "It is necessary for the establishment of rational therapy."

Once correctly diagnosed, the lymphedema patient faces a lifetime of treatment because there is no cure. Swelling can be managed through a specialized massage technique known as manual lymphatic drainage, by using compression garments and bandages daily, by engaging in regular exercise and maintaining meticulous skin and nail care.

White points out that in many cases physicians are not acquainted with treatment for the condition and patients get most of their information from massage therapists. In fact she says often patients with swelling are diagnosed by therapists. Another difficulty according to White is the failure of insurance companies to pay for therapy or compression garments.

Solutions

Although there is no cure, Dr. David Feingold told those attending the Lighthouse conference that genetics may be the answer. "How do you generate new lymphatics?" That is the question being examined by the genetic researcher. Three genes have been identified, and experiments are under way.

Until an answer is found, awareness and education are the focus of the Lighthouse Lymphedema Network. A bill has been introduced by Georgia state Rep. Debbie Buckner. The house bill provides for a pilot program to test and evaluate a system of coverage for costs associated with the prevention and treatment of lymphedema and to provide for data collection.

The Atlanta organization has also set aside Oct. 22 as Lymphedema Awareness Day in Georgia.

Although awareness is growing, White points out that it is still "an image thing" and many of those with the condition are reluctant to go public and as a result there is still a lack of emphasis.

Ledger Inquirer