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October 17th, 2009

06:54 am: 12th State of Georgia Lymphedema Awareness Program
12th State of Georgia Lymphedema Awareness Program  
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THERE IS STILL TIME TO GET THOSE REGISTRATIONS IN  
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An educational and awareness conference for patients, caregivers and professionals!
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Where?  
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Saint Joseph Hospital Auditorium 5665 Peachtree Dunwoody Road, NE Atlanta, GA 30342
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When?
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Saturday, October 24, 2009 7:30 am - 5:00 pm  
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Schedule
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7:30-8:15am Registration – Continental Breakfast – Exhibits 8:15-8:30am Welcome
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Plenary Session:  
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8:30-10:00am Moderator: Elaine Gunter, MT (ASCP)  
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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
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10:00-10:30am Break Exhibits  
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10:30-12:00 Charles McGarvey, PT, DPT, MS, FAPTA  
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Lymphedema Secondary to Pelvic Cancer Treatment: A Review of Literature and Clinical Practice  
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12:00 – 1:30pm Lunch Exhibits  
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1:00-2:15pm Teen (only) Networking -Parent Networking (parents of children with lymphedema)  
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Separate sessions  
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Plenary Session:  
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1:30-2:15pm Daniel Beless, MD, Director of Wound Care at Saint Joseph Hospital Wound Care and the lymphedema patient  
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2:15-3:00pm DeCourcy Squire, PT, CLT-LANA  
Research updates from the International Society of Lymphology of Lymphedema Diagnosis and Treatment  
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3:00-3:30pm Break Exhibits  
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3:30-4:30pm Panel Discussion 
All speakers will participate in this question and answer discussion  
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4:30-5:00pm Closing Remarks


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September 29th, 2009

05:41 am: 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:

http://www.facebook.com/group.php?gid=163672565089

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

http://www.lymphedemalighthouse.org/

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

Pat


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September 11th, 2009

07:57 am: Georgia Lymphedema Education and Awareness Program

11th Annual Lymphedema Education & Awareness Program

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

Where?

Piedmont Hospital

Piedmont Hospital

Richard H. Rich Auditorium

1968 Peachtree Road, NW, Building 77

Atlanta, Georgia 

When?  

Saturday, October 18, 20087:30 am - 5:30 pm

Program includes

What to expect of tissue after radiation?

What is the physiology response of radiation?

What does radiation do to the lymph nodes? - Peter Rossi, MD

How does vascular flow affect the lymphatics? - Ken Harper, MD

Expectations of surgery. - Christopher Hart, MD, FACSThe Lymphatic System, Wound Care,

Infections and Treatment - Paula Stewart, MDParent Networking

Aquatic Exercises

The Connection of obesity and increased swelling in people with lymphedema and lipedema.and more.

Additional information and registration form - Home website - Lighthouse Lymphedema Network

See you there - Pat

 

 



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May 23rd, 2009

11:16 am: Modified Charles procedure using negative pressure dressings for primary lymphedema: a functional as
*Editor's note:  Here is yet another article relating to the use of debulking surgeries for lymphedema.  I am still in disbelief that this surgery is being used in the 21st century.  The followup time frame noted is 27.3 months.  This is ridiculous as 2 years after my surgeries, I was still doing good.  There were no complications and the swelling was diminshed.  Longer term follow-ups would reveal this hidden dangers and eventual complications of this procedure.  The doctors did no favors for these patients.  In reality, they have sentanced them to severe complications years down the road. 

Please, please dear reader before anyone talks you into this surgery read carefully my article relating to it:

Complications of Lymphedema Debulking Surgery

http://www.lymphedemapeople.com/phpBB3/viewtopic.php?t=200

Modified Charles procedure using negative pressure dressings for primary lymphedema: a functional assessment.

Ann Plast Surg. 2009 Jun

van der Walt JC, Perks TJ, Zeeman BJ, Bruce-Chwatt AJ, Graewe FR.

Department of Plastic and Reconstructive Surgery, Tygerberg Hospital/ University of Stellenbosch, Francie van Zijl Drive, Parow, Private Bag X3, South Africa. chrisenkate@mweb.co.za

OBJECTIVE: The Charles procedure is an aggressive operation usually only indicated for severe lymphedema as it often yields an unpredictable outcome. We modified this procedure in order to achieve predictable results.

METHODS: The modification entailed the use of a negative-pressure dressing after the initial debulking surgery and then the delay of skin grafting by 5 to 7 days. Patients were graded by means of a lower limb functional scale to assess their functional status pre- and postoperatively.

RESULTS: Eight patients with severe primary lymphedema underwent a modified Charles procedure. All patients underwent this procedure without any major complications with an average resection of 8.5 kg of lymphedematous tissue. Minor complications included operative blood loss and additional regrafting (3 patients). The average follow-up was 27.3 months.

CONCLUSION:
The results show a dramatic functional improvement in quality of life and a high overall satisfaction rate of patients undergoing this procedure. Our modification makes this a relatively simple procedure with a predictable outcome.

PubMed

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November 28th, 2008

09:39 am: Localized lymphedema (elephantiasis): a case series and review of the literature
Localized lymphedema (elephantiasis): a case series and review of the literature

by: Song Lu, Tien A Tran, David M Jones, Dale R Meyer, Jeffrey S Ross, Hugh A Fisher, John A Carlson

Journal of Cutaneous Pathology, Vol. 9999, No. 9999. (2008) 

 

Background: Lymphedema typically affects a whole limb. Rarely, lymphedema can present as a circumscribed plaque or an isolated skin tumor.

 

Objective:  To describe the clinical and pathologic characteristics and etiologic factors of localized lymphedema. 

 

Methods: Case2013control study of skin biopsy and excision specimens histologically diagnosed with lymphedema and presenting as a localized skin tumor identified during a 4-year period.Results:  We identified 24 cases of localized lymphedema presenting as solitary large polyps (11), solid or papillomatous plaques (7), pendulous swellings (4), or tumors mimicking sarcoma (2). Patients were 18 females and 6 males with a mean age of 41 years (range 16201374). Anogenital involvement was most frequent (75%) 2013 mostly vulva (58%), followed by eyelid (13%), thigh (8%) and breast (4%).

 

Causative factors included injury due to trauma, surgery or childbirth (54%), chronic inflammatory disease (rosacea, Crohn's disease) (8%), and bacterial cellulitis (12%). Eighty-five percent of these patients were either overweight (50%) or obese (35%). Compared with a series of 80 patients with diffuse lymphedema, localized lymphedema patients were significantly younger (41 vs. 62 years old, p = 0.0001), had no history of cancer treatment (0% vs. 18%, p = 0.03), and had an injury to the affected site (54% vs. 6%, p = 0.0001).

 

Histologically, all cases exhibited dermal edema, fibroplasia, dilated lymphatic vessels, uniformly distributed stromal cells and varying degrees of papillated epidermal hyperplasia, inflammatory infiltrates and hyperkeratosis. Tumor size significantly and positively correlated with history of cellulitis, obesity, dense inflammatory infiltrates containing abundant plasma cells, and lymphoid follicles (p < 0.05). A history of cellulitis, morbid obesity, lymphoid follicles and follicular cysts predicted recurrent or progressive swelling despite excision (p < 0.05).

 

Conclusions:  Localized lymphedema should be considered in the etiology of skin tumors when assessing a polyp, plaque, swelling or mass showing dermal edema, fibrosis and dilated lymphatics on biopsy. A combination of lymph stasis promoting factors (trauma, obesity, infection and/or inflammatory disorders) produces localized elephantiasis.

Wiley InterScience



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09:37 am: Analysis of the coding regions of VEGFR3 and VEGFC in Milroy disease and other primary lymphoedemas.

Hum Genet. 2008 Nov 12.

Connell FC, Ostergaard P, Carver C, Brice G, Williams N, Mansour S, Mortimer PS, Jeffery S; Lymphoedema Consortium.

Medical Genetics Unit, Clinical Developmental Sciences, St Georges University of London, Cranmer Terrace, London, SW17 0RE, UK.

Milroy disease (hereditary lymphoedema type I, MIM 153100) is a congenital onset primary lymphoedema with autosomal dominant inheritance. Mutations in the gene, vascular endothelial growth factor receptor 3, VEGFR3 (FLT4), are known to cause Milroy disease, but there is uncertainty about the prevalence of VEGFR3 mutations in patients with primary lymphoedema and more specifically in those with a phenotype that resembles Milroy disease. This study aims to address this issue and thereby delineate the Milroy disease phenotype. Fifty-two patients with primary lymphoedema were analysed for mutations in the coding regions of VEGFR3. Patients were divided into four groups: Typical Milroy disease with family history (group I), typical Milroy disease with no family history (group II), atypical Milroy disease (group III), and complex primary lymphoedema (group IV). Results demonstrated that with rigorous phenotyping the likelihood of detecting VEGFR3 mutations is optimised. Mutation prevalence is 75% in typical Milroy patients with a family history (group I) and 68% if positive family history is not a diagnostic criterion. A positive family history is not essential in Milroy disease. The likelihood of detecting VEGFR3 mutations in patients who have a phenotype which is not typical of Milroy disease is very small (<5%). For the 22 mutation positive patients, 14 novel VEGFR3 mutations were identified, two of which were in exon 22 and one in exon 17, confirming that these exons should be included in VEGFR3 analysis. No mutations were found outside the kinase domains, showing that analysis of this part of the gene is not useful for Milroy disease patients. VEGFC, which encodes the ligand for VEGFR3, was sequenced in all patients with typical Milroy disease (groups I and II) and no mutations were identified.

Springerlink

November 25th, 2008

08:56 am: Analysis of the coding regions of VEGFR3 and VEGFC in Milroy disease and other primary lymphedemas.
Analysis of the coding regions of VEGFR3 and VEGFC in Milroy disease and other primary lymphoedemas.

Hum Genet. 2008 Nov 12.

Connell FC, Ostergaard P, Carver C, Brice G, Williams N, Mansour S, Mortimer PS, Jeffery S; Lymphoedema Consortium.

Medical Genetics Unit, Clinical Developmental Sciences, St Georges University of London, Cranmer Terrace, London, SW17 0RE, UK.

Milroy disease (hereditary lymphoedema type I, MIM 153100) is a congenital onset primary lymphoedema with autosomal dominant inheritance. Mutations in the gene, vascular endothelial growth factor receptor 3, VEGFR3 (FLT4), are known to cause Milroy disease, but there is uncertainty about the prevalence of VEGFR3 mutations in patients with primary lymphoedema and more specifically in those with a phenotype that resembles Milroy disease. This study aims to address this issue and thereby delineate the Milroy disease phenotype. Fifty-two patients with primary lymphoedema were analysed for mutations in the coding regions of VEGFR3. Patients were divided into four groups: Typical Milroy disease with family history (group I), typical Milroy disease with no family history (group II), atypical Milroy disease (group III), and complex primary lymphoedema (group IV). Results demonstrated that with rigorous phenotyping the likelihood of detecting VEGFR3 mutations is optimised. Mutation prevalence is 75% in typical Milroy patients with a family history (group I) and 68% if positive family history is not a diagnostic criterion. A positive family history is not essential in Milroy disease. The likelihood of detecting VEGFR3 mutations in patients who have a phenotype which is not typical of Milroy disease is very small (<5%). For the 22 mutation positive patients, 14 novel VEGFR3 mutations were identified, two of which were in exon 22 and one in exon 17, confirming that these exons should be included in VEGFR3 analysis. No mutations were found outside the kinase domains, showing that analysis of this part of the gene is not useful for Milroy disease patients. VEGFC, which encodes the ligand for VEGFR3, was sequenced in all patients with typical Milroy disease (groups I and II) and no mutations were identified.

Springerlink

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November 10th, 2008

01:16 pm: Pat O'Connor Medical Blogs and Online Support Groups

Good Morning Everyone

Many of you know I have a few medical blogs and support groups - and
there have been significant changes. AOL wiped out all their groups
and blogs, so I had to move everything from there to another place.

Sooooooooo......here is an updated list for all my medical blogs and
support groups.


Pat

***My Lymphedema, Lymphatic, Edema, Medical Blogs***

My Life with Lymphedema

Frontline personal blog on lymphedema which includes many
inspirational articles and writings as well. Find information,
support and most importantly hope. Life is not a requiem for that
which we can not do, but a celebration for that which we can.


http://mylifewithlymphedema.blogspot.com/

Developmental Disorders of the Lymphatics

Information and resources for medical conditions relating to the
developement of the lymphatic system. Clearing house for peer
reviewed information and news. Includes all disorders of lymphatic
dysplasia


http://lymphsystemdisorders.blogspot.com

Edema and Related Medical Conditions

Clearinghouse for peer reviewed information and articles relating to
edema (swelling) related medical conditions. Includes conditions,
causes and treatments


http://edemainformation.blogspot.com/

Lymphedemaville

This is about journeying through life with a medical condition called
lymphedema. ... What it is, what it is like, what to expect , how to
treat the condition, and most important discovering hope in having a
rich and wonderful life despite lymphedema.


http://lymphedemaville.wordpress.com/

Disorders of the Lymph System

Peer reviewed information on disorders relating to the lymph system,
lymph nodes and lymph vessels.


http://lymphaticdisorders.wordpress.com/

Bacterial Infections

Information on all types of bacterial infections. Peer reviewed new
and information on causes, prevention and treatments.


http://bacteriainfections.blogspot.com

Antibiotics

Complete guide to antibiotics. Clearinghouse of peer reviewed
information on what antibiotics do, what they treat and how they work
and most importantly when or when not to use them.

http://antibioticinformation.blogspot.com/

Fungal Infections

Clearinghouse of peer reviewed news and information on all types of
fungal infections. Causes, Symptoms, Treatments and Prevention are
covered.


http://fungalinfections.wordpress.com/

Cellulitis

Clearinghouse for the infection known as cellulitis. Peer reviewed
news and information on its causes, treatments, prevention and
complications


http://cellulitisinfections.blogspot.com/

Trisomy Disorders

Peer reviewed information on chromosome disorders. These include Down
Syndrome, Turner Syndrome, Klinefelter Syndrome, Prader-Willi
syndrome, 22q11 deletion syndrome, Cri-du-chat (cat cry) syndrome,
Turner's Syndrome and more.

http://trisomydisorders.wordpress.com/

Lipedema

Millions of people are afflicted with this almost totally
misunderstood and frustrating medical condition. Articles relating to
living with lipedema, treatments and other peeer reviewed
information. Works in conjunction with our online support group
Lipedema


http://www.xanga.com/lipedema

Lymphangiectasia/Xanga

Medical condition caused by the dilation of the lymphatic vessels.
Peer reviewed medical information and news with personal stories
about how patients can cope with this little understood condition.
Works inconjunction with our online support group All About
Lymphangiectasia


http://www.xanga.com/lymphangiectasia

Lymphangiectasia

Medical condition caused by the dilation of the lymphatic vessels.
Peer reviewed medical information and news with personal stories
about how patients can cope with this little understood condition.
Works inconjunction with our online support group All About
Lymphangiectasia


http://lymphangiectasia.blogspot.com/

Lymphedema

Another one of our blogs on the medical condition lymphedema. Peer
reviewed information on causes, treatments complications and personal
accounts of coping with lymphedema


http://www.xanga.com/lymphedema

Lymphedema

Another one of our blogs on the medical condition lymphedema. Peer
reviewed information on causes, treatments, complications and
personal articles on coping with this little understood noncurable
condition


http://lymphedemahome.livejournal.com/

MRSA Information

Peer reviewed information on the causes, treatments, complications
and prevention of this emerging and potentially deadly spreading
infection


http://mrsainformation.blogspot.com/

Men's Health - Xanga

Articles and information relating to a broad spectrum of medical and
health issues relating to men.


http://www.xanga.com/Mens_Health

Alternative Medicine and Lymphedema

In this blog, we will explore all the various alternative medicine
treatments used or proposed for lymphedema and whether or not they
are both effective and save
.


http://alternativemedicinelymphedema.blog.com/

Cutaneous Lymphoma

As a thirteen year survivor of lymphoma, this is of special interest
to me. This is a cancer that is increasing in the numbers afflicted
with it and until recently not well understood. Peer reviewed
information on symptoms, diagnosis, treatments and compInformation
and resources for medical conditions relating to the developement of
the lymphatic system. Clearing house for peer reviewed information
and news


http://cutaneouslymphoma.blogspot.com/

Kaposi's Sarcoma

A rapidly emerging form of cancer. Clearinghouse of peer reviewed
information on causes, symptoms, treatments, diagnosis and
complications.


http://kaposissarcomainfo.blogspot.com/

Merkel Cell Cancer

Clearinghouse of peer reviewed information on this emerging and
rapididly increasing form of cancer. Diagnosis, Treatments,
Management and complications


http://merkelcellcancer.blogspot.com/

Lymphedema of the Leg

http://lymphedemaoftheleg.blogspot.com/

Burkitt's Lymphoma

This information is about specific types of non-Hodgkin lymphoma
known as Burkitt lymphoma and Burkitt-like lymphoma.


http://burkittslymphoma.blog.com/

***Our Family of On Line Support Groups***

Advocates for Lymphedema

 

Our frontline online support group for lymphedema.  Provides community, support, information and advocacy on behalf of patients from all corners of the globe.

http://health.groups.yahoo.com/group/AdvocatesforLymphedema/


Children with Lymphedema

 

A very special support group for children who have lymphedema and their parents.  Tremendous source of community, support and information on the day to day care of children with the condition.

http://health.groups.yahoo.com/group/childrenwithlymphedema/


Men with Lymphedema

 

Support group for men who have lymphedema.  Brotherhood, comradere, support and information - a safe place to let the hair down and ask questions and interact.

http://health.groups.yahoo.com/group/menwithlymphedema/


Teens with Lymphedema

 

A special group for teenagers who face difficult issues during their teen years in how to cope with, live with and most important to learn how to live a rich and rewarding life despite having lymphedema

 http://health.groups.yahoo.com/group/Teens_with_Lymphedema/


All About Lymphangiectasia

 

Support group for parents, patients, children who suffer from all forms of lymphangiectasia. This condition is caused by dilation of the lymphatics. It can affect the intestinal tract, lungs and other critical body areas. Works inconjunction with our Xanga blog Lymphangiectasia 


http://health.groups.yahoo.com/group/allaboutlymphangiectasia/


Lipedema, Lipodema, Lipoedema

 

Millions of people are afflicted with this almost totally misunderstood and frustrating medical condition.  Articles relating to living with lipedema, treatments and other peeer reviewed information. Works in conjunction with our online support group Lipedema

 http://health.groups.yahoo.com/group/lipedema_lipodema_lipoedema/
                     

Lymphatic Disorders Support Group

 

Works in conjunction with our blogs on Disorders of the Lymph System and Developemental Disorders of the lymph system.  All lymphatic conditions included with special emphasis on lymphatic malformations, lymphangiomas, cystic hygromas, Castleman's Disease

 http://health.groups.yahoo.com/group/lymphaticdisorders/


All About Lymphoedema – Australia

 

Support group for our friends down under with lymphedema.  Provides a great sources of information, community and support.

http://au.groups.yahoo.com/group/All_About_Lymphoedema/

 
All About Lymphedema

 

Our frontline Google support group for lymphedema.  Information, support, community and help.

http://groups-beta.google.com/group/All-About-Lymphedema

 
Lymphedema Research

 

A leader in providing peer reviewed research studies and abstracts on lymphedema.

http://groups.google.com/group/lymphedemaresearch


Let's Talk ! Lymphedema patients UK  

   

Our online support group for the UK.  Accross the pond group for information, support and community for those with lymphoedema.

 

http://groups.msn.com/LetsTalkLymphedemapatientsGroup/_whatsnew.msnw



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November 4th, 2008

10:33 am: Patient Strategies Identified For Managing Symptoms Of Lymphedema

Patient Strategies Identified For Managing Symptoms Of Lymphedema

Article Date: 30 Oct 2008 - 4:00 PDT

An estimated 2 million women in the United States are at risk of developing lymphedema, a condition that involves the chronic and abnormal swelling of the arm, chest, neck and/or back, as a complication of breast cancer treatment. While physicians will recommend proven techniques to manage the swelling, a University of Missouri researcher has found that patients often won't follow the recommendations, or they will use alternative treatments and not discuss them with their doctors.

"Lymphedema has a profound impact on health and well-being, but often goes undiagnosed and untreated by physicians and patients," said Jane Armer, professor in the Sinclair School of Nursing and director of nursing research at the Ellis Fischel Cancer Center. "Understanding the ways that people self-manage the chronic symptoms of lymphedema is essential to facilitate an improvement in the use of treatments and the quality of life of these people."

Armer surveyed breast cancer survivors with lymphedema about their practices for managing symptoms, including swelling and heaviness. She found the most common strategy was to not treat the symptom. For 12 out of 14 symptoms, patients reported taking no action 29 percent to 65 percent of the time. This finding is consistent with Armer's conclusions from a previous study.

"Considering the entire lymphedema population (not just breast cancer survivors), the percentage of patients who treat their symptoms is probably even lower," Armer said. "Data have shown that breast cancer survivors are more proactive in seeking information for self-care, and they are more likely to follow a daily self-care plan for lymphedema than those who developed lymphedema for a different reason."

Armer found that patients who choose to treat their symptoms use a variety of techniques, which can be divided into three main groups. The first group includes recommended management techniques, non-pharmaceutical strategies typically recommended by physicians, including manual lymphatic drainage, compression garments and elevation. Patients use these techniques most often, or 47 percent of the time. The second group was pharmaceutical treatments including the use of medications both prescription (antibiotics) and over-the-counter (pain medication and cortisone cream). The final group was lay symptom management techniques, strategies not necessarily recommended by health care professionals but common sense, folk, complementary or alternative methods.

According to Armer, patients increasingly are using lay therapies, but less than 40 percent report discussing their use of complementary therapies with a doctor. Previous research has found these unconventional therapies are generally not taught at medical schools or are unavailable at most hospitals.

"While lay symptom management is undoubtedly an important form of health care, the discrepancy between the use of self-care treatments and doctor-recommended treatments for lymphedema must be addressed," Armer said. "It's important for health care professionals to recognize the scope and diversity of practices that breast cancer survivors choose when managing their symptoms. Continued research of this issue can help develop effective management techniques to be incorporated into standards of practice for physicians and patients."

The Lymphedema Research Project at Ellis Fischel and Sinclair School of Nursing provides research opportunities for breast cancer survivors to participate in oncology nursing research. The studies are funded by the Lance Armstrong Foundation and the National Institutes of Health. MU researchers maintain a database of participants for future studies; interested participants for breast cancer and/or lymphedema research may submit their contact information and will be contacted if they meet the criteria for current or new studies. Friends, family members and co-workers who have not had breast cancer or lymphedema also may enroll for studies that require matched control participants.

"We are experiencing great success by connecting participants to studies through our database. It gives people an opportunity to contribute to breast cancer research and allows our research efforts to continue," Armer said. "A critical next step in lymphedema research is the rigorous evaluation of the effectiveness of self-management techniques."

Source: Emily Smith
University of Missouri-Columbia

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October 27th, 2008

07:52 am: The psychosocial effects of cancer-related lymphedema.

Hi Friends, visitors and members.

First just wanted to say my health has caused me to take a most unwanted vacation from being online for a couple months.  I had some frustrating setbacks with lymphedema, lung fluid and the like.  But, I'm back and will continue posting new atsracts and info.  I found the one below interesting and a bit heopful as maybe this represents a "glint" of increasing interest in us at lymphedema patients and in the whole spectrum of how lymphedema effects our daily/moment to moment life.

Pat


The psychosocial effects of cancer-related lymphedema.

J Palliat Care. 2008 Autumn

Towers A, Carnevale FA, Baker ME.

Palliative Care Division, McGill University, Montreal, Quebec, Canada.

Life-long lymphedema is a common complication of cancer therapy. In this Canadian study, we adopted a phenomenological methodology to explore the experience of patients with cancer-related lymphedema, and their spouses. We conducted audio taped semistructured interviews with 11 patients and eight spouses, who were recruited through a university hospital-based lymphedema clinic and through local lymphedema therapists. We developed an analytical framework from the data themselves, and tentative hypotheses and thematic categories that represented shared case features. Participants expressed frustration because of lack of financial support from government and insurance companies, inadequate knowledge and perceived lack of interest on the part of physicians, and lack of awareness in society in general. This study suggests further investigation of the funding of lymphedema treatments, and of the effect of lymphedema on work, intimacy, and leisure activities. Our research findings will inform educational initiatives and cancer rehabilitation programs.

PubMed

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August 24th, 2008

06:24 am: Lymphedema People

Lymphedema People

Public Notice

Statement of Ownership

The website Lymphedema People also referred hereafter as
lymphedemapeople.com is a distinct separate entity from the domain registered as
http://lymphedemapeople.com and should not be construed to be one in the same.

The website Lymphedema People (commonly referred to as
lymphedemapeople.com) predates the domain registration as the website as established in 2003 and the aforementioned internet domain was established in 2006.

Ads placed on the website and donations are the responsibility of the domain and are to be used to provide financial reimbursement to the domain for the expenses it incurs as hosting the website.  Responsibility for those ads and questions concerning the ads rests with the domain and not the website.  Users of the website agree to a hold harmless agreement regarding the ads and donations.

Under the terms of intellectual property, established by legal precedent and law, the website Lymphedema People
(lymphedemapeople.com) is the creative, intellectual and personal property of Pat O’Connor (Charles P. O'Connor, II).

The website name Lymphedema People both as a trademark and a website name is the sole property of Pat O’Connor. Use of that name is prohibited by any other agency, person group or entity.

All online support groups, blogs and entities so identified as being sponsored by Lymphedema People are the sole personal property of Pat O’Connor and are governed by the hosting agency.  These agencies include, but are not restricted to Yahoo, Google, AOL, Lycos and MSN.

These groups are listed as sponsored as defined by the website Lymphedema People and not the domain.

Pat O’Connor

August 14, 2008

 



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August 12th, 2008

08:16 am: Breast cancer-related lymphoedema risk reduction advice: A challenge for health professionals.
Breast cancer-related lymphoedema risk reduction advice: A challenge for health professionals.

Cancer Treat Rev. 2008 Aug

Nielsen I, Gordon S, Selby A.

Discipline of Physiotherapy, James Cook University, Townsville, QLD 4811, Australia.

Breast cancer-related lymphoedema (BCRL) is a debilitating, distressing condition affecting approximately one in five breast cancer survivors (Clark B, Sitzia J, Harlow W. Incidence and risk of arm oedema following treatment for breast cancer: a three-year follow-up study (editor's note: new research revises this to 35-40% of survivors). QJM 2005;98:343-8). The evidence-base for breast cancer-related lymphoedema risk reduction advice is scant and contradictory, with most studies in the area limited by small numbers, retrospective design and other methodological inadequacies. Current advice has the capacity to profoundly alter quality of life following treatment for breast cancer. Health professionals should review the risk reduction advice they provide to reflect the current understanding of aetiology and risk factors. Further research is required to provide more evidence for the content, to identify optimal methods of precautionary education delivery and to determine the effect of the advice on the patient's quality of life and perception of recovery.

PubMed



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August 4th, 2008

05:56 am: Effects of complex decongestive physiotherapy on edema and quality of life of lower limb lymphedema
Effects of complex decongestive physiotherapy on the oedema and the quality of life of lower unilateral lymphoedema following treatment for gynecological cancer.

Kim SJ, Park YD.

Department of Physical Therapy, Youngdong University, Chungbuk, Republic of Korea.

There is increasing interest in the health-related quality of life (QOL) of patients with chronic lymphoedema. The purpose of the present study was to ascertain whether or not complex decongestive physiotherapy (CDP) for 57 gynecological cancer patients with unilateral lymphedema results in a measurable change in the oedema and QOL, and % excess volume correlated with change in QOL. % excess volume was significantly (P < 0.05) decreased after CDP. The QOL scores were significantly (P < 0.05) higher than the scores at baseline, indicating an improvement in the QOL. The change in % excess volume was associated with a change in physical functioning, social functioning, role-physical, bodily pain and general health at baseline and 1 month (P < 0.05). This study suggests that significant improvements are made in the QOL of gynecological cancer patients with unilateral lymphoedema after CDP, which is necessarily correlated with limb reduction.

PMID: 18637114 [PubMed - as supplied by publisher]



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July 26th, 2008

12:10 pm: Meet the Therapist – new forum on Lymphedema People

Meet the Therapist – new forum on Lymphedema People

Have you ever needed to or wished that you could ask a therapist a quickie question about your treatment program, bandaging tips,garment problems?

Well, now you can!!!!

Announcing our new forum:

MEET THE THERAPIST

Managed by Tom Kinchloe, Certified Lymphedema Therapist

Go to:

Lymphedema People

http://www.lymphedemapeople.com/

Click on:

Forums

Scroll down until you see the forum - and ask away :-)

If any of our membes are also therapists, you are most welcome to join in and help.

Tom is a member of our Yahoo group:

Advocates for Lymphedema

not only is he a top notch lymphedema therapist, but has a caring and compassionent heart for those he serves. 

I am very excited about this new forum and look forward to seeing everyone's participation.

A half million people have visited Lymphedema People so far in 2008, come and be a part of the most popular website in the world for lymphedema and lymphatic conditions. 

Pat O’Connor
Founder and Director



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July 17th, 2008

05:51 am: Advocates for Lymphedema

===============================================

Join us as we work for lymphedema patients everywhere:

Advocates for Lymphedema

Dedicated to be an advocacy group for lymphedema patients. Working towards education, legal reform, changing insurance practices, promoting research, reaching for a cure.

http://health.groups.yahoo.com/group/AdvocatesforLymphedema/

To Subscribe

AdvocatesforLymphedema-subscribe@yahoogroups.com

Join us today to learn about, for daily discussions and for advocacy on behalf of lymphedema.

Patt O'Connor

Lymphedema People / Advocates for Lymphedema

==============================================



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01:12 am: 11th Annual Georgia Lymphedema Education & Awareness Program

11th Annual Lymphedema Education & Awareness Program

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

at
Piedmont Hospital

Richard H. Rich Auditorium

1968 Peachtree Road, NW, Building 77

Atlanta, Georgia


Saturday, October 18, 2008

7:30 am - 5:30 pm

Program includes:

What to expect of tissue after radiation? What is the physiology response of radiation? What does radiation do to the lymph nodes? - Peter Rossi, MD

How does vascular flow affect the lymphatics? - Ken Harper, MD

Expectations of surgery. - Christopher Hart, MD, FACS

The Lymphatic System, Wound Care, Infections and Treatment

Paula Stewart, MD

Parent Networking

Aquatic Exercises

The Connection of obesity and increased swelling in people with 

lymphedema and lipedema.


and more.

Additional information and registration form:

http://images.acswebnetworks.com/1/187/ ... rogram.pdf


Lighthouse Lymphedema Network


http://www.lymphedemalighthouse.org/



:arrow:
:arrow: See you there :!: :!: :!:



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July 13th, 2008

09:16 am: Survey of Doppler use in lymphoedema practitioners in the UK.
 Survey of Doppler use in lymphoedema practitioners in the UK.

Br J Community Nurs.
2008 Apr

Todd M, Welsh J, Key M, Rice M, Adam J.

Specialist Lymphoedema Service Glasgow. marie.todd@ggc.scot.nhs.uk

Lymphedema practitioners anecdotally don't use Doppler in the vascular assessment of their patients prior to the application of compression. The belief is that the results are inaccurate in the presence of edema. The objective of this article is to gather information about the use of Doppler by lymphoedema specialists in the vascular assessment of lymphoedema patients in the UK. A questionnaire on the use of Doppler in lymphoedema patients was distributed to 250 delegates attending the British Lymphology Society Conference in Glasgow in Ocotber 2005. There appears to be no consensus in the method of vascular assessment of lymphoedema patients. More research is needed to ascertain the accuracy of Doppler in the assessment of lymphoedema patients. Guidelines are also required in the vascular assessment of lymphoedema patients based on scientifically valid evidence.

PMID: 18595307 [PubMed - in process]



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09:13 am: Important changes on Lymphedema People

Important changes on Lymphedema People

I did want to advise everyone on some important changes on Lymphedema People.

I have put out a number of new Wiki pages in the last week. There is a page you can go to to see any new or revised articles:

New Articles and Updates

You can also "subscribe" to this page and automatically be advised when new articles and updates are posted. When you go to the page, scroll way down and click on the "RSS/XHL Feed" on the left bottom corner. 

That takes you to a page where at the top in a yellow background panel you can subscribe to that page. Click on
the "Subscribe to the feed" line.

On the new website entry page:

http://www.lymphedemapeople.com/

Search

We now have a search line that finally brings together the ability to search all HTML articles; Wiki pages and the Forums. When you enter a term on that lines, now no matter where on the entire site a subject is, you will finally be able to find it.

Translate

While translation technology still has a long way to go, Google has the best tool available. Below the search line is a new translation device. We literally have several thousand people a week visiting the website from around 130 countries. This translation device will translate 24 languages other then English When a language is chosen, the website will change and come back up in the chosen language.

I am excited about this as it helps so many people have access to lymphedema information in their native language.

This is what it is all about folks.

I hope you enjoy the new features.

Pat



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June 27th, 2008

07:38 am: 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.

Address for correspondence: Stanley G. Rockson, M.D., Division of Cardiovascular Medicine, Falk Cardiovascular Research Center, Stanford University School of Medicine, Stanford, CA 94306. Voice: +1-650-725-7571; fax: +1-650-725-1599.  srockson@cvmed.stanford.edu
 
Lymphatic disease is quite prevalent, and often not well clinically characterized. Beyond lymphedema, there is a broad array of human disease that directly or indirectly alters lymphatic structure and function. The symptomatic and objective presentation of these patients can be quite diverse.
 
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.
 


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06:49 am: Effect of vascular endothelial growth factor C (VEGF-C) gene transfer in rat model of secondary lymp
Effect of vascular endothelial growth factor C (VEGF-C) gene transfer in rat model of secondary lymphedema.

Vascul Pharmacol. 2008 May

Liu Y, Fang Y, Dong P, Gao J, Liu R, Tian H, Ding Z, Bi Y, Liu Z.

Department of Anatomy, Shandong University School of Medicine, Jinan, Shandong, 250012, PR China.

Secondary lymphedema has been clinically well described, but a cure is still lacking. Although there have been previous investigations using plasmid DNA for gene therapy, few have focused on the use for the treatment of lymphedema. Therefore, we investigated the effects of VEGF-C gene transfer for the treatment of lymphedema using our plasmid pcDNA3.1-VEGF-C. We produced a surgical model of secondary lymphedema in the rat hindlimb and treated with local intradermal VEGF-C transfection to investigate the efficacy of gene transfer. Magnetic resonance imaging (MRI) (P less then 0.05), B ultrasound (P less then 0.05), and water displacement volumetry (P less then0.05) demonstrated a reduction of lymphedema in therapy group as compared to controls. Histological and immunofluorescent studies demonstrated numerous newly formed lymphatic vessels in therapy group. Our results indicate that VEGF-C gene therapy has produced new lymphatic vessels which may have improved functional lymphatic drainage to reduce lymphedema volume in our model.

Abbreviations: VEGF, Effect of Vascular endothelial growth factor; MRI, Magnetic resonance imaging; VEGFR, Effect of Vascular endothelial growth factor receptor; HE, hematoxylin and eosin.



Elsevier ScienceDirect

 

Keywords: VEGF-C; Rat; Secondary lymphedema


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