Lymphedema Awareness

As a result of cancer surgery which involved removing my lymph nodes, I developed a chronic, irreversible condition called "Lymphedema".    There is no cure, no medication, and very few options for treatment (see below).  It is a life in some level of pain every day - during flareups, the pain is often debilitating.  It is estimated that at least five million Americans suffer from lymphedema, and probably many more. While millions of people have this disease, very little is understood about it in the medical community, insurance industry, or the general community at large.  I nearly lost everything while trying to maintain the substantial financial cost of the necessary treatments and at-home aids I needed to manage this disease, initially without insurance coverage.  How can you help others with Lymphedema get the message to the medical and insurance community?  Well, read on, my friends! 

What is Lymphedema, anyway, and why should I care?

Lymphedema is an accumulation of lymphatic fluid in the affected area that causes extreme swelling in the region of the body managed by the removed lymph nodes. When the impairment becomes so great that the lymphatic fluid exceeds the lymphatic transport capacity, an abnormal amount of protein-rich fluid collects in the tissues of the affected area. Left untreated, this stagnant, protein-rich fluid not only causes tissue channels to increase in size and number, but also reduces oxygen availability in the transport system, interferes with wound healing, and provides a culture medium for bacteria that can result in life-altering and life-threatening complications.   The effects of lymphedema are not merely physical - often, the mental and emotional scars of living with this disease are worse than the illness itself.  No longer being able to participate in a number of activities, wearing the same clothes, and the fear of the smallest mosquito bite turning into life-threatening cellulitis impacts a lymphedema patient's life in a major way.  Not only has the person experienced the devastation of a cancer diagnosis, but now has to live with this constant reminder of it.  Chances are you know someone who has had cancer -- if so, then you likely know someone who suffers with this insidious disease. 

How is Lymphedema treated?

The recognized standard of treatment for lymphedema is Complete Decongestive Therapy (CDT). CDT comprises four interacting protocols: manual lymph drainage (MLD), compression therapy, lymph drainage exercises, and skin care. 

How Can You Help?

Make your voice known! The Lymphedema Diagnosis and Treatment Cost Saving Act will improve coverage for the treatment of lymphedema. Untreated lymphedema is progressive and leads to infection, disfigurement, disability and in some cases even death.  Thus, prognosis for the patient is far worse and treatment more costly when the disease is not identified and treated in the earlier stages.  By taking just a few (less than 5) minutes to contact Congress, you will show support to those suffering from this illness.  The "How Can I Help" link below takes you directly to the submission form which you simply fill out and transmit within minutes.  Your support is so very much appreciated! 

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