Total Lipedema Care

Keeping Things Moving with
World Lymphedema Awareness Month

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March marks the sixth consecutive year of World Lymphedema Awareness.  The ubiquitous turquoise-blue ribbon symbolizes the month-long tradition of raising global awareness about the commonly misunderstood, acute lymphatic disorder, as well as honoring the millions affected by the disease.

Though most have heard the term “lymphedema” uttered from friends, family members, or those in the medical community, the chronic condition is still, unfortunately, widely under-diagnosed, mis-diagnosed, and under-insured in most parts of the world.  Before we can gain game-changing traction on treating this incurable, life-altering disease, or perhaps even find a cure, we first must make a collective effort in disseminating educational, factual, and empowering information, including the social and physical challenges it poses on its sufferers.

What is Lymphedema?

Lymphedema is the acute disruption of the body’s lymphatic system, including, but not limited to, complications from a cancer diagnosis/treatment or the inability for the lymph to flow freely from a particular area.  This disruption leads to an adverse back-up of lymph (drainage) fluid within the tissues underlying the skin that contains waste products, toxins, and large blood proteins.  The accumulation of lymph results in painful, tender swelling in the legs, trunk, arms, and in some cases, the genitals. Though lymphedema mostly affects adults, children as young as newborns have been diagnosed with the distressing disorder.  Because lymphedema is still so underrepresented in the medical community, it can lead to death if left untreated.  The causes of lymphedema range from genetics to an injury to anything that has damaged the lymph nodes or lymphatic system.

Getting a Leg up on Lymphedema

Because of the severe lack of public awareness, support, and healthcare provider information, lymphedema patients often suffer in silence.  Some mistakenly self-diagnose their condition to be obesity and implement strict dietary and fitness protocols only to be left feeling exasperated by the increase of painful symptoms and social stigma.  Getting educated is half the battle to beating lymphedema.  For those lymphedema sufferers who DO get properly diagnosed, they often don’t acquire the necessary treatment due to insurance coverage issues and/or accessibility.  Whether treatment be access to compression garments or undergoing a more aggressive approach, like surgical intervention, most insurance companies simply don’t cover the cost of lymphedema care.  

Thanks to staunch lymphedema awareness advocates, like Heather Ferguson, founder of Lymphedema Advocacy Group and the loving mother of a son born with the condition, there is hope.  Back in 2013, Ferguson spearheaded a congressional bill that sought to address the egregious lack of insurance coverage for those living with lymphedema.  The Lymphedema Treatment Act seeks to enable Medicare/Medicaid coverage for compression garments and advocates for private insurance companies to follow suit.  “It is important that we make sure lymphedema patients have the access to the treatments that can help ease the pain and improve their quality of life,” declares Washington state representative Dave Reichart.

Learn More About Lymphedema

If you’re living with lymphedema or know someone who is, there is help.  To learn more about how you can make a difference, donate for various initiatives, and obtain informative, life-saving information, be sure to visit lymphedemaadvocacygroup.org.  Or, lend an ear to the lymphedemapodcast.com that features educational, empowering, and inspiring stories and interviews from lymphedema patients paving the way to global awareness.  Lymphiestrong.com is a wonderful, refreshing organization led by an unlikely father-daughter duo from Texas who are on a tireless crusade for change surrounding lymphedema awareness and advocacy within the medical community.  This is a great site where one can connect and console with other real-life “lymphies.”  

What are some of the steps you’re looking to take to gain insight and spread lymphedema awareness this month?  We’d love to know.  Please comment below.

To learn more, please contact our Beverly Hills, California office to schedule a consultation with any of our highly trained specialists.

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