Lymphedema – what you may not know

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Lymphedema is a chronic, but treatable condition marked by an accumulation of lymph fluid (i.e. swelling) in parts of the body where lymph nodes or lymphatic vessels are damaged or inadequate.

An estimated 3-5 million1 Americans are affected, most commonly from cancer, with 1.5 -3 million being Medicare beneficiaries. As cancer survivorship increases, a growing number of men, women and children are becoming affected by lymphedema.

There are two types of lymphedema – primary & secondary. Primary, or congenital lymphedema, makes up about 10%2 of those with lymphedema. The other 90%3 is secondary (or acquired lymphedema). Within the secondary category, there are two additional categories – non-cancer related, equaling about 22%, and cancer-related, making up 68%.

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While these are the hard facts about lymphedema, there are some lesser-known facts that may be unfamiliar to the general public. What are these?

  1. Most physicians in the US are taught about the lymphatic system for 1 hour or less during their 4 years of medical school training, yet up to 5 million Americans suffer from lymphedema, including many that are undiagnosed or undertreated. That is more than ALS, Cystic Fibrosis, Multiple Sclerosis, Muscular Dystrophy and Parkinson’s diseases combined.
  2. There is no known cure for lymphedema, but there are effective ways to treat it. Compression therapy is the most critical component of treatment. Without it, patients are at an increased risk for complications and disability. Compression bandages are used to help reduce swelling, and compression garments are used to keep the swelling from returning.
  3. The earlier, the better for treating lymphedema. When it comes to lymphatic swelling, the earlier you treat the problem, the better off you’ll be. When the swelling stays in one place for too long, the proteins present in the fluid can form a network and cause the swelling to become firm. When this stage is reached, it can become even more difficult to treat and thus become irreversible.
  4. Medicare and many private insurance policies do not cover compression garments, wraps or bandages, all the supplies needed for compression therapy. Under current Medicare policy, lymphedema patients have coverage for Manual Lymphatic Drainage (MLD) preformed by a qualified Medicare provider such as a physical or occupational therapist, and when certain conditions are satisfied, a pneumatic compression pump. Without the use of compression garments, MLD and lymphedema pumps provide no lasting benefit and do not enable the patient to maintain their condition.
  5. The Lymphedema Treatment Act is a federal bill currently in Congress that aims to improve insurance coverage for compression supplies, which would allow lymphedema patients to maintain a healthy and productive life. The Lymphedema Advocacy Group is an all-volunteer organization of patients, caregivers, healthcare professionals and industry partners leading the effort to pass this bill.
  6. You can lower your risk of developing lymphedema. How? Obesity increases your risk for developing lymphedema and can make it harder to treat, so try and stick to a healthy weight. Exercising can help reduce the risk for lymphedema. Keeping on top of your health with your doctor – and noting any changes in the size, color or temperature of your skin is important. Wearing loose-fitting clothes, jewelry and undergarments helps keep lymphedema at bay. Lastly, avoiding infections, burns or injuries, and practicing good hygiene, skin and nailcare protects your body from triggering lymphedema.

If you would like to learn more about lymphedema and products for treatment:

References:

  1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3652571/#R1
  2. Journal of the American College of Cardiology. 2008: 52 (10): 799-806
  3. Vascular Medicine. 1998: (3): 145-156

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