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

Acute Lymphedema

Acute versus gradual-onset lymphedema

There are four types of acute lymphedema.

Type One Acute Lymphedema

The first type of acute lymphedema is mild and lasts only a short time, occurring a few days after surgery to remove the lymph nodes or after injury to the lymphatic vessels or veins just under the collarbone. The affected limb may be warm and slightly red, but is usually not painful and gets better within a week by keeping the affected arm or leg supported in a raised position and by contracting the muscles in the affected limb (for example, making a fist and releasing it).

Type Two Acute Lymphedema

The second type of acute lymphedema occurs 6 to 8 weeks after surgery or during a course of radiation therapy. This type may be caused by inflammation of either lymphatic vessels or veins. The affected limb is tender, warm or hot, and red and is treated by keeping the limb supported in a raised position and taking anti-inflammatory drugs.

Type Three Acute Lymphedema

The third type of acute lymphedema occurs after an insect bite, minor injury, or burn that causes an infection of the skin and the lymphatic vessels near the skin surface. It may occur on an arm or leg that is chronically swollen. The affected area is red, very tender, and hot and is treated by supporting the affected arm or leg in a raised position and taking antibiotics A compression pump should not be used and the affected area should not be wrapped with elastic bandages during the early stages of infection. Mild redness may continue after the infection.

Type Four Acute Lymphedema

The fourth and most common type of acute lymphedema develops very slowly and may become noticeable 18 to 24 months after surgery or not until many years after cancer treatment. The patient may experience discomfort of the skin; aching in the neck, shoulders, spine, or hips caused by stretching of the soft tissues or overuse of muscles; or posture changes caused by increased weight of the arm or leg. Lymphedema PDQ

Unilateral psoriasis in a woman with ipsilateral post-mastectomy lymphedema.

Unilateral psoriasis in a woman with ipsilateral post-mastectomy lymphedema.

2011 Dec

Kim M, Jung JY, Na SY, Na SJ, Lee JH, Cho S.

Source

Department of Dermatology, Seoul National University College of Medicine, Seoul, Korea.

Abstract

Psoriasis is a multi-factorial disease with various clinical manifestations. We present a case of unilateral psoriasis associated with ipsilateral lymphedema that developed after mastectomy for breast cancer. A 42-year-old Korean woman was referred to our clinic with a 1-month history of multiple erythematous scaly patches on the right arm, back, and breast and was diagnosed with psoriasis by a skin biopsy. Three years previously, she had been diagnosed with breast cancer (T1N2), underwent a right quadrantectomy and axillary lymph node dissection, and completed adjuvant chemotherapy followed by high-dose adjuvant radiotherapy. She had started rehabilitation therapy on the right arm for secondarylymphedema 30 months previously. Because of the long interval between radiation and psoriasis, we speculated that changes in the local milieu caused by the lymphedema might be a causative factor. We hereby report a rare case of unilateral psoriasis following post-mastectomy lymphedema.

PubMedCentral

Multidisciplinary Lymphedema Treatment Program.

I have long been a proponent of a lymphedema treatment "team." This is a team of medical professionals that would be involved in a patients lymphedema management program.

For example, in my own team I have:

Primary Care Physician

Infectious Disease Doctor

Oncologist

Pulmonary doctor (due to lymphedema related pulmonary complications)

Certified lymphedema therapist

At times, this team has expanded to include a home health nurse, physical therapist, and an occupational therapist.

As you can see from the article others might include a vascular surgeon, physiotherapist, dietitician, dermatologist, and even a psychologist.

A team approach is designed around the patients very specific medical needs and their very specfic medical situation. This way, there is a "complete" patient care focus.

The study:

Multidisciplinary Lymhpedema Treatment Program

February 2012

Abstract

Lymphedema is an underrecognized and undertreated condition that requires a multidisciplinary approach in an individualized program that will address the special needs of each patient. In an ideal setting of an outpatient management program the team should be composed of a vascular surgeon, a dermatologist, a physiotherapist, a dietician, a psychologist, a social worker, and an office employee, working together in the assessment and management of all aspects of lymphedema. All treatment strategies and actions taken should ultimately focus on the improvement of the quality of life of patients suffering from lymphedema and on the prevention of lymphedema in high-risk patients.

Sage

Development and use of guideline-derived quality indicators for community lymphoedema.

Development and use of guideline-derived quality indicators for community lymphoedema.

Feb 2012

Abstract

Background  Treatment of lymphoedema is complex and needs specific skills. There are no standards for the evaluation of quality of care.

Objective 

Development and application of indicators for the measurement of quality of care in lymphoedema.

Methods 

In a three-step process including a national Delphi expert consensus, quality indicators were derived from national and international guidelines. In a cross-sectional study involving a large spectrum of care providers, the quality of lymphoedema care in the community was assessed by transforming the indicators to one unweighted quality index (QI).

Results 

A total of 12 quality indicators were identified and applied to n = 348 patients with lymphoedema and lipolymphoedema of any origin in the metropolitan area of Hamburg (90.8% female, mean age 57, SD 14.5 years). On average, 55% of the quality indicators were met, and 64.8% of the patients were satisfied with lymphoedema care.

There was a significant correlation between QI and satisfaction.

Conclusions 

The quality indicators and the QI are feasible and valid for the evaluation of quality of care. They can support optimizing lymphoedema care.

Wiley Online Library

Management of limb lymphedema

Management of limb lymphedema.

Jan. 2012

[Article in French]

Vignes S.

Source

Unité de lymphologie, centre national de référence des maladies vasculaires rares, hôpital Cognacq-Jay, 15, rue Eugène-Millon, 75015 Paris, France.

Abstract

Keywords: Lymphedema, Treatment, Physiotherapy, Low Stretch bandage, compression

Lymphedema results from impaired lymphatic transport with increased limb volume. Cellulitis is the main complication, but psychological or functional discomfort may occur throughout the course of lymphedema. Lymphedema management is based on complete decongestive physiotherapy (multilayer low stretch bandage, manual lymph drainage, skin care, exercises). First phase of treatment leads to a reduction of lymphedema volume. The second phase stabilizes the volume and is based on elastic compression. Resection surgery is a useful tool in external genitalia lymphedema.

Elsevier

Lymphangiogenesis: A Potential New Therapy for Lymphedema?

Lymphangiogenesis: A Potential New Therapy for Lymphedema?

2012 Jan

Cooke JP.

Source

Stanford Cardiovascular Institute, Stanford, CA.

Abstract

At the level of the capillaries, the systemic circulation loses about 2-4 liters of fluid and about 100g of protein into the interstitium daily. This ultrafiltrate of the systemic capillaries is returned to the circulatory system by the lymphatics. The lymphatic vasculature is highly specialized to perform this service, beginning with the blind-ended lymphatic capillaries. These vessels are highly permeable to protein, fluid and even cells, due to fenestrations in their basement membrane, and discontinuous button-like junctions rather than tight intercellular junctions as observed in the systemic capillaries(1). The lymphatic capillaries merge into collectors and larger lymphatic conduits that are invested with vascular smooth muscle (capable of contracting and propelling lymph forward) and valves for unidirectional flow. These conduits merge at lymph nodes, delivering antigens to the immune cells and serving as an early warning system of pathogen invasion. The lymph nodes drain into conduits that ultimately merge into the thoracic duct which empties into the left subclavian vein.

American Heart Association

Lymphedema Genetics

When I originally became active in online groups, blogs, and websites, there were only two genes identified as being involved with causing hereditary lymphedema.

Now, eight specific genes have been identified as causing several hereditary lymphedema syndromes and associated syndromes with lymphatic malformations or dysplasia.

At our main webste, Lymphedema People, we have complete information pages on each one:

Lymphedema Gene CCBE11

Lymphedema Gene FLT4

Lymphedema Gene FOXC2

Lymphedema Gene GATA2

Lymphedema Gene GJC2

Lymphedema Gene KIF11

Lymphedema Gene SOX18

Lymphedema Gene VEGFC

Lymphedema Family Study - Financial Crises

Family members, last Fall, I wrote about the desperate financial situation of the Lymphedema Family Study at the University of Pittsburg and I also wanted to share it with you.

When I got active online back in 2003, there was only one confirmed lymphedema gene - VEGFC - and one suspected FOXC2.

Now, a few years later there are eight confirmed genes responsible for hereditary lymphedema and the syndromes associated with it.

We always complain about the medical world not caring, and I wish I could convey Dr. Finegold's dedication to lymphedema genetic studies. You'll never find anyone more committed to the lymphedema world then he is.

This is our chance to stand up and be counted - and - to show that we believe our lives to be worth being cured. If there is anything, anything you can do, please follow the link to the study and help.

Lymphedema Family Study

Here is an excerpt from his note:

"I'm in a situation where I need to reach out to people in the lymphedema community.

I believe we have identified an opportunity to significantly affect wound healing by stimulating lymphangeogenesis in preparations of adipocyte stem cells or a mesenchymal stromal fraction prepared from adipocytes.

I believe this may also possibly be an avenue to the effective treatment of lymhepdema.

At this point in time, we don't haave sufficient funding to do the experiments for proof of principle. I need to identify a commercial or foundation entity who might be willing to seed us for six months or so to solidify our preliminary data.

Best,

David (Dr. Finegold)

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__________________________________________________

I really am here friends

Hi to Everyone

It has been probably a year since I've posted anything in my blogs. I so apologize to everyone, but my health has simply prevented me from much activity, even on the computer. But, it is high time I try again to see how much I can push things.

I'll put in an update on my own lymphedema shortly.

My very very best to all my visitors and readers

Pat O Connor - Blog author and co founder/director of:

Lymphedema People

2010 Georgia Lymphedema Education and Awareness Program

2010 Georgia Lymphedema Education and Awareness Program

13th State of Georgia Lymphedema Education and Awareness Program, October 16,
2010, Decatur, GA.

View and Print out Brochure to Register (vertical menu item)

The LLN Brochure also includes much information about our not-for-profit
organization in Georgia and can be printed out (vertical menu item)

The program is entitled:

SHEDDING LIGHT ON LYMPHEDEMA

Sponsored by the Lighthouse Lymphedema Network

Courtney Day

Courtney Day

One of the special treats of these Lymphedema groups is that you get the opportunity to meet new people.

This past week, I had the most delightful time meeting a lovely young lady with Lymphedema. Her name is Courtney day, a fourteen year old high school student and co-author of a new book where she shares her journey so far with LE.

I bought a copy and read it when I got back to the hotel and it was delightful. I think you’ll find it refreshing to read as she is so open and honest about her struggles in ways that we as adults are too timid to do. It is very encouraging as well as she is unashamed of her faith and shares that as well and how she is determined not to let lmphedema ruin or control her life – or to let it rob her of her dreams and hopes for the future.

In addition to her school activities, Courtney is active in her church, the National Charity League (helps organizations such as the Rnald McDonald House and the Drake house. She is also involved with a local food help group Norcross Food Co-0p..

She and her co-author, LE therapist Emily Smith also have a Facaebook group:

Emily is a Vodder trained and certified therapist and has also written a couple books on Stretch Therapy.

A Leg Up on Lymphedema - Facebook group

The book is:

A Leg up on Lymphedema

And can be ordered through this link: A Leg up on Lymphedema

Enjoy!

Pat

Baby Kayden in Oklahoma

Baby Kayden in Oklahoma

Good Morning Everyone

I wanted to bring this to everyone’s attention and encourage anyone who can to help this little baby. Kayden has vascular Lymphedema and was just born on August 18, 2009…he’s got a long road ahead of him so let’s do anything we can for him and his family:

Baby Kayden

He’s a real little doll too!

Thanks Everyone!!!!!!!!!!!!!!!!!!!!

Pat

12th State of Georgia Lymphedema Awareness Day

State of Georgia Lymphedema Awareness Program

.

Lighthouse Lymphedema Network

.

THERE IS STILL TIME TO GET THOSE REGISTRATIONS IN

.

An educational and awareness conference for patients, caregivers and professionals!

.

Where?

.

Saint Joseph Hospital Auditorium 5665 Peachtree Dunwoody Road, NE Atlanta, GA 30342

.

When?

.

Saturday, October 24, 2009 7:30 am - 5:00 pm

.

Click here for Registration Form

.

Schedule

.

7:30-8:15am Registration – Continental Breakfast – Exhibits 8:15-8:30am Welcome .

Plenary Session:

.

8:30-10:00am Moderator: Elaine Gunter, MT (ASCP)

.

Nicole Stout, PT, MPT, CLT-LANA Will discuss her studies on early intervention for breast cancer including the anatomy, reconstruction, breast cancer surgeries, truncal and other upper extremity lymphedema

.

10:00-10:30am Break Exhibits

.

10:30-12:00 Charles McGarvey, PT, DPT, MS, FAPTA

.

Lymphedema Secondary to Pelvic Cancer Treatment: A Review of Literature and Clinical Practice

.

12:00 – 1:30pm Lunch Exhibits

.

1:00-2:15pm Teen (only) Networking -Parent Networking (parents of children with lymphedema)

.

Separate sessions

.

Plenary Session:

.

1:30-2:15pm Daniel Beless, MD, Director of Wound Care at Saint Joseph Hospital Wound Care and the lymphedema patient

.

2:15-3:00pm DeCourcy Squire, PT, CLT-LANA

Research updates from the International Society of Lymphology of Lymphedema Diagnosis and Treatment

.

3:00-3:30pm Break Exhibits

.

3:30-4:30pm Panel Discussion

All speakers will participate in this question and answer discussion

.

4:30-5:00pm Closing Remarks

New Lymphedema Treatment Clinic - Myrtle beach, South Carolina

It gives me great pleasure to announce a new lymphedema treatment clinic in the Myrtle Beach, South Carolina area:

Tom Kincheloe, OTR/L, CLT
Founder/Clinical Director
RIVERTOWN LYMPHEDEMA CLINIC AND REHAB, LLC.
100 Prather Park Drive, Suite A
Myrtle Beach, SC 29588-7910
Bus. Phone: (843) 742-5701
Bus. Fax: (843) 742-5704
Cell: (843) 957-2422
Email: erivertownlymph@sc.rr.com

I know Tom personally and two things strike me about him.

First, is his real concern/compassion for his patients.

Secondly is his knowledge of lymphedema.

A winning combination! So if you live in his area and are looking for lymphedema help, give him a call.

Pat