Mar 25, 2008

Lymphatic Fluid

Many people that I meet are puzzled by lymphadema. They usually ask me right away if a doctor can prescribe something that will remove the fluid. In my head I'm usually wanting to scream, "WOW what a mind blowing thought! Do you honestly not think I've already thought of THAT?!" but because I was raised with manners, I control myself and explain that the fluid that builds up in lymphedema isn't just "water" and can't be treated with diuretics. It's important to understand this because if you suffer with lymphedema you will probably have to explain this to many people in your life.

A really wonderful website called "Lymphedema People" has this very well written information about diuretics. Please visit this site for lots of wonderful information and support.
To understand why these agents are not recommended for the treatment of lymphedema we must first start with a basic definition of edema and lymphedema.

Edema: Abnormal pooling or build up of fluid in tissues. Generally caused by underlying medical conditions such as hypertension, varicose veins, thrombophlebitis, congestive heart failure, kidney failure steroid therapy, inflammatory reactions, or injury or trauma.

Diuretics are used to assist in the correction of the base problem causing the edema.

Lymphedema: A disorder in which “lymph” collects usually in a limb as a result of a congenital, hereditary malformation of the lymphatic system, or is a result secondary conditions such as node removal for biopsies, damage to the lymphatics from radiation, injury or trauma or by parasitic infection. Diuretics cannot help the underlying condition of lymphedema.

Why not use diuretics for lymphedema?

Perhaps the single most important consideration is in the composition of the lymph fluid caused by lymphedema. The fluid is a protein-rich substance that provides a breeding and nourishment center for bacteria. This has to be removed to lesson the risks of cellulitis and lymphangitis.

This fluid also has to be removed so as to prevent the formation and progression of fibrosis as lymphedema advances through the various stages.

Diuretics remove none of this waste fluid."

Lymphedema People founder Pat O'Connor also gives this advice to people whose doctors may recommend diuretics to treat lymphadema,

"Please, please don't get a diuretic to treat the lymphedema. Diuretics will in the long run make the lymphedema worse. They remove the water, but are unable to remove the heavier waste proteins in that fluid. That will cause tissue hardening, more swelling and even more susceptibility to infections.

Tell the doctor (don't ask - tell) that you want a referral to a Certified Lymhpedema Therapist."

Mar 20, 2008

This is bit of a refresher - but it's always good to keep a focus on the root of a problem if you are looking for solutions, so here it is again . . .


Many have never heard of the Lymphatic System, let alone Lymphedema. So before talking of Lymphedema we need to take a look at what the Lymph System is and how it works.

When we take a look at the body from the outside in, we have our skin, just below that is our layer of fat, and then under that is our Lymph System (comprised of lymph collectors/capillaries, vessels that lead to the deeper lymphatic vessels along which pathway are the lymph nodes), and this over lays our muscles. The blood capillary system comes into the area between the fat layer and the lymph capillaries and releases the nutrients to the skin and surface tissues of the body. It is a clear fluid including a lot of proteins. As the blood leaves, it takes back 90% of what it dropped off- most of the clear fluid and the smallest particles. The other 10% of clear fluid (with the larger particles of proteins/cell debris/medications we’ve taken/etc.) makes up the lymph fluid. The human body produces approximately 2 liters of lymph fluid every day.

The Lymph Nodes are the “garbage disposals” of the system that filter and breaks down all those particles, balancing the solid to liquid consistency. Also, they manufacture white blood cells for our immune system. The last tube of the lymph system goes up through the chest and dumps the lymph fluid into the blood system just above the heart. There the lymph fluid joins the blood, being further filtered through the liver and kidneys, and then passing out of the body through urine.

In brief, the Lymphatic System is a network of vessels, tissues, and organs in vertebrate animals that helps the body regulate fluid balance and fight infection.

Lymphedema is when an area of the body swells due to the collection of lymph fluid. This can be any part of the body: arm, foot, leg, breast, abdomen, head, face, chest wall, genitals…The lymph fluid builds up when the lymph system has in some way become impaired. Causes of an impaired Lymph System include:

  • Treatment of lymph node removal and radiation for cancer: this reduces the amount of fluid the lymph system is able to transport per unit of time, and can lead to Lymphedema right away, or years down the road.
  • Scar tissue from trauma or surgery: Trauma from injury or surgery if it blocks or affects the lymph flow.
  • Congenital malformation: some people are born with a lymphatic system that was not developed fully. This can show up at birth, within the first year of life, in the teen years, or as an adult fallowing a somewhat minor injury.
  • Venus insufficiency: if the veins are not returning the blood as efficiently as they should, then the blood system is not taking bake its 90% of the clear high protein fluid it releases to nourish the skin and surface tissues as the blood pools, and that means more than 10% is remaining for the lymph system to transport. The lymph system can step up to the plate for a while, even years, but over time it gets tired and gradually is unable to keep up. Veins can become stressed to insufficiency due to obesity, pregnancy, blood clots, or simple genetics.

The cause of the lymphedema, and other medical conditions the person may have, need to be taken into consideration during treatment, but the basic treatment is the same for all.

Sonja M. Maul PT, CLT-LANA
National Board Certified Lymphedema Therapist

Mar 18, 2008

Living with Lymphedema

This is a really good video posted on youtube by Earl Chicoine from Montreal who tells what it's like to live with lymphedema of the legs, a debilitating disease caused from a build-up of lymph fluid under the skin.

I found the video very poignant and touching.

Mar 11, 2008

In An Unlikely Place

The other day I happened to be perusing paper dolls online, for a reason that has nothing to do with lymphadema, when I discovered these paperdolls which made me do a double take.

Now, I'm not saying the dolls have bilateral lower extremity lymphedema and possibly lipedema - but take a look at them for yourself and you tell me!

I just had to share them with you.

Mar 7, 2008

Marilyn Wesstbrook Garment Fund

This was posted by the National Lymphadema Network's Executive Director Saskia R.J. Thiadens, R.N. and may be helpful information for someone needing financial help with compression garments.

The Marilyn Wesstbrook Garment Fund

An Introduction

It is with tremendous pleasure that I introduce the NLN Garment Fund.
This is a dream that has come true not only for me, but for our many
patients who do not have insurance or the financial means to purchase
the much needed compression stocking(s)/ sleeve(s) . It was Marilyn
Westbrook's choice to make sure that no other patients have to endure
the pain and frustrations she went through six months prior to her
passing (Dec 23, 2007). Marilyn and her husband Doyle donated a
sunstantial amount of money to the NLN which will allow patients who
qualify to pay for their garment(s). In order to qualify you will
need to be an NLN member and submit an application; an online
application will be published very soon. For more information please
contact our office.

For those of you that would like to and are able to contribute to the
fund, you can make a check directly to the NLN and identify "Marilyn
Westbrook Fund". The NLN can also accept donations of other personal
assets, such as stocks from your investment portfolio. If you would
like to learn more about how you can donate and the substantial
benefits to you personally as a donor, please call the NLN.

With the increased restriction of our health insurance and federal
laws it is heartwarming to know that we will be able to assist a
percentage of the many patients. This fund will help make sure
patients wear the much needed garments to maintain their quality of
life. Let's all applaud Marilyn and her family and thank them for
this HUGE gift.

- Saskia R.J. Thiadens, R.N., Executive Director

Establishing the Marilyn Westbrook Fund
By Doyle Westbrook

Marilyn was always a fighter. With her first cancer she went the
route of traditional treatment including, surgery, chemotherapy and
radiation in an effort to beat the cancer quickly so she could be
there for her children. Throughout the course of treatment, she
remained strong and supportive of her children.

With the latest round, chemotherapy was not an option; her experience
with the maximum dose of radiation in the previous battle proved to
her that its debilitating affect on her healing made it not an
option. Marilyn decided to embark on a non-traditional complimentary
method of treatment.

The cancer metastasized; while the alternative therapy was helping
her gain amazing physical healing, including helping the surgical
scars from her first surgery as well as the latest hysterectomy fade
away, she had two more out-patient surgeries to remove cancerous
lymph nodes. Now her concern was managing the likely lymphedema and
she asked our HMO to let her talk to one of their lymphedema
specialists. The result of her attempt to minimize potential
lymphedema was a wrong prescription for a compression garment that
actually accelerated the lymphedema.

The immediate impact was that in early January 2007, she had to stop
her complimentary treatment. While we were still searching for a way
to treat the cancer, her focus had to be on the more immediate
problem of the worsening lymphedema. It was getting so bad that by
March I was asking my youngest daughter to schedule her wedding no
later than July of 2007. In June, the wedding was scheduled for
September 9th.

We had found a lymphedema massage specialist outside of our HMO, but
traveling back from the clinic undid all the benefits of the manual
lymph drainage massage. While looking through a year-old community
phone book, Marilyn found an ad for Michelle Coxon, who was not only
a certified specialist but she was willing to come to our house.

Even so, in between Michelle's daily weekday visits, especially on
the weekend, Marilyn's left leg would puff way up. I was getting
concerned that she wouldn't be able to attend the wedding even if she
did make it to that day.

Early in the treatment provided by Michelle, Marilyn became
practically bedridden; this was due to the lymphedema in her leg.
Michelle knew of a miracle worker named Don Kellogg, and arranged for
him to see her. Don brought in a wheelchair pad so she could see the
material he would use to make her leg appliance. It brought her so
much relief while lying in bed, that she asked to keep it; he let
her. Then Don went home and sewed up her leg appliance overnight.

He brought it back the next day. After just one partial day of use,
she was back up and walking in our house.

Unfortunately, the treatment for lymphedema was not a treatment for
cancer. Marilyn succumbed to the cancer on December 23, 2007 . She
was wearing a second much smaller appliance right up until the end as
it helped reduce the pain.

Don has stayed in touch as he lost his wife in very similar
circumstances. It was his experiences with her lymphedema that led
him to develop these custom appliances and start his own company,
Telesto Medtech. They are not compression garments. Their
directional stitching literally wicks the lymph away from the
impacted area to the healthier portions, even secondary channels, of
the lymph system.

When I asked how I could honor Marilyn by helping, I learned that
many insurance companies don't recognize this miracle appliance as a
medical device. Even after using profits from the payments he does
receive towards helping other people with lymphedema, there are still
so many more people who need the help but can't get it. A child born
with an impaired lymph system can need as many as 30 appliances
before the growing stops.

Don suggested that I contact Saskia Thiadens, RN at the National
Lymphedema Network to see whether something special could be done to
help more people get this miracle. Saskia was very receptive and
together we formed the Marilyn Westbrook Fund. It has the same
charitable donation status as donations to the National Lymphedema
Network do. The National Lymphedema Network will dispense the money
the fund has available to deserving individuals to acquire lymphedema
appliances, compression sleeves/stockings and alternative garments.
Donations can be made to the fund by giving to the "National
Lymphedema Network for the benefit of Marilyn Westbrook's Fund." See
the mention on page for more information on how to contribute and be
a part of the fund.

Thank you Don. Marilyn would have succumbed to an infection from the
lymphedema much earlier than she did had you not entered our lives.
You extended, as well improved her quality of life so much that you
made it possible for her to attend her daughter's wedding, enjoy
Thanksgiving with her daughter's new in-laws, and meet her son's
girlfriend's, now fiancée's, mother. She is survived by her three
children, two sisters, brother, mother, and husband.

In loving memory,
Doyle Westbrook

Mar 6, 2008

Lastest Developments

I'm always on the lookout for new lymphadema treatments or studies - hope springs eternal and all that! I'm certainly not giving up and I want to remain open about treatment options. I saw a few things recently in the news that intrigued me so I thought I would share them.

The first thing is 10 year study that was done on lymph "replacement" surgery, where lymph nodes were harvested from "healthy" areas of a persons lymph system and replanted into the areas that were not functioning properly. It's an interesting idea - I'm not sure I'm convinced it would work because I worry that the area where the lymph nodes are harvested from may develop lymphadema, and believe me, I want to keep the swelling down wherever I can!

Lymphatic Tissue Transplant in Lymphedema—A Minimally Invasive, Outpatient, Surgical Method: A 10-Year Follow-up Pilot Study

Lymphedema is mainly characterized by swelling, fibrosis, and nonpitting edema. The aim of this study was evaluation of the long-term (10 years) effects of autologus lymphatic tissue implant in lymphedema. Lymphatic tissue from 9 patients (harvested form the same patient in areas not affected by lymphedema) was reimplanted into the affected limb, and these patients were followed for 10 years. Lymph nodes were harvested at the neck, axillary, or inguinal space (contralateral limb). Results showed that limb volume was decreased in the treatment group vs. controls. In ultrasound, black, low density, lymphatic spaces were visible in 100% of patients at inclusion but in only 23% of these subjects at 10 years. Thus, this early report proposes a new, minimally invasive method to improve lymphedema. Studies in progress will indicate the role of lymphatic transplant in the management of lymphedema and the best indications for this method.

Angiology, Vol. 59, No. 1, 77-83 (2008)
DOI: 10.1177/0003319707308564
© 2008 SAGE Publications

Another interesting article I ran across discussed the using of honey for wound dressing. The wounds would be from any number of causes from burns to lymphedema, especially leg ulcers. I find this a very interesting idea, especially because I have been trying some "alternative" treatments for my lymphadema. This press release looks like it's from some pharmaceutical company or medical supply company, but perhaps you could ask your therapist about this treatment or research the curative effect of honey on wounds for yourself.

PRINCETON, N.J., March 6 /PRNewswire-FirstCall/ -- Derma Sciences, Inc. (BULLETIN BOARD: DSCI) , a provider of advanced wound care products, announced today that seven abstracts detailing the clinical usage of its newly released MEDIHONEY Wound & Burn Dressings with Active Leptospermum Honey were accepted for presentation at the upcoming annual Symposium on Advanced Wound Care conference, held this year between April 24 - 27 in San Diego, CA. Additionally, the company has announced that two of the abstracts will be presented as oral presentations to a general assembly of the conference attendees.

Chairman and CEO Ed Quilty said, "MEDIHONEY dressings continue to receive positive levels of acceptance by clinicians worldwide and has become the most talked about treatment for hard-to-heal wounds in many forums. Having several abstracts related to MEDIHONEY dressing accepted in the largest annual international conference of its kind validates our very high expectations, and helps to further our goal of advancing wound care by uncovering technological innovations, empowering caregivers, and focusing on unmet patient needs."

The abstracts include the following:

"The Importance of Medical Grade Honey Rather than Table Honey in the Treatment of Wounds"; Cooper RA, Jenkins L, Rowlands R. (oral presentation)

"The Inhibition of Biofilms of Pseudomonas Aeruginosa with Manuka Honey"; Cooper RA, Jenkins L, Rowlands R. (oral presentation)

"Manuka Honey Alginate Wound Dressing Facilitates Healing Of Chronic Diabetic Lower Extremity Ulcerations"; Robert Frykberg, DPM, MPH, Arthur Tallis, DPM, Cherese Thomas-Ramoutar, DPM, Edward Tierney, DPM.

"Comparison of Honey-Impregnated Calcium Alginate Dressings to Non-Impregnated Calcium Alginate Dressings on Wound Healing"; Catherine T. Milne, APRN, MSN, CWOCN; Connecticut Clinical Nursing Associates, LLC, Bristol Hospital Wound, Ostomy, Lymphedema Center, Bristol, CT.

"It Looks Like Honey. It Smells Like Honey. Yes, It Is Honey!"; Becky Strilko, RN, BSN, CWOCN, APN, Christine Barkauskas, RN, BA, CWOCN, APN, Andrea Mcintosh, RN, BSN, CWOCN, APN, Noreen Reaney, RN, BSN, Wound Ostomy and Continence Student, Provena Saint Joseph Medical Center, Joliet, IL.

"The Influence of Catalase on the Antibacterial Activity of Honey"; Cooper RA, Jenkins L, Rowlands R.

"The Effects of a Leptospermum Honey Dressing on Methicillin-Resistant Staphylococcus Aureus (MRSA) Biofilms Using a Well Established Porcine Wound Infection model"; Stephen C. Davis, Yan Rivas, Joel Gil, Roberto Perez, Jose Valdes, Robert Kirsner, Department of Dermatology and Cutaneous Surgery, University of Miami School of Medicine, Miami, Florida.

About Derma Sciences

Derma Sciences is a global manufacturer and marketer of advanced wound-care products. Its key product, MEDIHONEY, is sold throughout the world by Derma Sciences and Comvita New Zealand -- the licensor of the patented honey-based technology -- and is the leading brand of honey-based dressings for the management of wounds and burns. The product has been shown to be effective in a variety of wounds and burns, and was recently the focus of two positive large-scale randomized controlled studies on leg ulcers. For more information about Derma Sciences, Inc., visit its home page on the Internet at

About the SAWC

The SAWC is the Annual Symposium for the Association for Advancement of Wound Care and the Wound Healing Society Meeting. It is an annual conference specifically dedicated to the wounds and wound-related issues. The largest conference of its kind drawing attendees from all over the world, the meeting is an informational hub for multidisciplinary wound care clinicians and researchers. The SAWC/WHS comprises four days of educational sessions, meetings, interactive events, and social gatherings, including a pre- and post-conference.

Forward-looking Statements

Statements contained in this release that are not statements of historical fact may be deemed to be forward-looking statements. Without limiting the generality of the foregoing, words such as "may," "will," "expect," "believe," "anticipate," "intend," "could," "estimate" or "continue" are intended to identify forward-looking statements. Readers are cautioned that certain important factors may affect the Company's actual results and could cause such results to differ materially from any forward-looking statements which may be made in this release or which are otherwise made by or on behalf of the Company. Factors which may affect the Company's results include, but are not limited to, product demand, market acceptance, impact of competitive products and prices, product development, completion of an acquisition, commercialization or technological difficulties, the success or failure of negotiations and trade, legal, social and economic risks. Additional factors that could cause or contribute to differences between the Company's actual results and forward-looking statements Include but are not limited to, those discussed in the Company's filings with the Securities and Exchange Commission.

Contact: Derma Sciences Inc Allen & Caron Inc Edward J. Quilty Rudy Barrio (US Investors) Chairman and CEO (609) 514-4744 Brian Kennedy (media) (212) 691-8087

Derma Sciences, Inc.

Mar 2, 2008

Lymphadema Fact Sheet

Bob Weiss, lymphactivist, has drafted a basic fact sheet for lymphadema. Here is his list:

  • There are between two and eight million lymphedema sufferers in the U.S.
  • Lymphedema is a swelling of a limb or part of the body that is caused by a functional inability of the lymphatic system to transport intercellular lymphatic fluid back to the circulatory system.
  • Lymphedema can affect the arms, legs, breast, back, abdomen, groin, genitalia and/or internal organs.
  • Congenital (primary) lymphedema is caused by a malformed lymphatic system and can be present at birth, develop at puberty, or onset in later years.
  • Secondary lymphedema can be caused by trauma to the lymphatic system, disease/infection, or parasites.
  • Secondary lymphedema is common as a result of cancer treatment (breast, prostate, reproductive, melanoma) or as a result of vein harvesting for coronary arterial by-pass operations.
  • Treatment procedures have been developed in Europe over the last 30 years, but have only been accepted by American medicine the last 10 years.
  • The current standard of treatment for lymphedema is called "complex or complete decongestive therapy" and has been the recommended protocol in Europe since 1995 (International Society of Lymphology) and in the U.S. since 1998 (American Cancer Society Lymphedema Workshop).
  • Complex Decongestive Therapy (CDT) is a multi-modal treatment that comprises ALL of the following modalities:
    1. Manual lymph drainage
    2. Compression therapy (bandage systems, compression garments, manually-adjustable compression devices)
    3. Lymph stimulating exercises while under compression
    4. Meticulous skin care
  • Today there are a number of schools that train medical practitioners in the protocols of CDT, and there is now a certification agency (LANA) that sets minimum training criteria.
  • Pneumatic compression pumps may be beneficial as an adjunct to CDT but should never be used in its absence.
  • Medicare has no national medical policy for the treatment of lymphedema and routinely denies coverage for the treatment components.
  • Some states have lymphedema treatment policies and will cover manual lymph drainage, but only as rehabilitative physical therapy and not as medical treatment.
  • Many patients have had Medicare denials for compression bandage systems and compression garments reversed by Medicare Administrative Law Judges, but only after many expensive appeals.
  • Treatment of lymphedema has been shown to reduce and eliminate the incidence of infection (cellulitis and lymphangitis) encouraged by stagnant lymph.
  • It can be demonstrated that proper treatment of lymphedema and compliance by patients with the daily protocols is not only good medicine, but it is good business (i.e., reducing or eliminating hospital stays by preventing recurrent infections).
  • There is a need for basic research into the lymphatic system, its functioning, pathologies, genetics and treatment.
  • There is a crying need to educate the medical community, medical insurance community and the public on the current medical standard of treatment of lymphedema.