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What you need to know about lymphoedema

What you need to know about lymphoedema
Lymphoedema is a chronic condition that can result from treatment for breast cancer
When I was diagnosed with breast cancer at the age of 38, the last thing on my mind was a lifelong condition like lymphoedema (lim-fo-dee-ma). I was focused on beating cancer. But nine months into my treatment my left arm and hand started to swell, and I soon learned that there was no beating it. 

A chronic condition on the rise 

Between 260,000 and 420,000 people have lymphoedema in the UK, a chronic condition that causes a part of the body like a leg or arm to swell because the lymphatic system doesn't work properly.
While primary lymphoedema, which stems from a congenital problem in the lymph system, is relatively rare, the number of secondary lymphoedema cases appears to be increasing. The secondary form is caused by infection, disease or trauma to the lymphatic system. Among these risks is cancer treatment. About two in ten people treated for breast cancer will develop lymphoedema.
"Lymphoedema causes a part of the body like a leg or arm to swell"
In my case, the breast cancer had spread to my lymph nodes, and during the mastectomy, all the lymphatic tissue in my armpit was removed.
Any kind of lymph node dissection increases the risk of lymphoedema. But so does radiotherapy because it can damage the lymphatic vessels. In some people, the other lymphatics in the body—and there are many of them—can compensate. In others like me, they don’t. English talk show host Trisha Goddard and the American actor Kathy Bates are two public figures who developed lymphoedema after breast cancer treatment. 

The lymphatic system is critical

The lymphatic system runs all throughout the body, and the lymph—a clear fluid—carries nutrients into the bloodstream and helps drain waste and bacteria out of it. Working muscles push against the lymph vessels and help move the lymph fluid through the lymphatic system. Small bean-shaped lymph nodes are part of the body’s immune system. They filter the lymph and make and keep a store of infection-fighting white blood cells.
Lymphatic system
Lymphoedema causes parts of the body to swell due to problems with the lymphatic system
Without an adequate lymph fluid current in an area of the body or a properly functioning garbage disposal system like the lymph nodes, cellular gunk can build up over time and cause permanent thickening called fibrosis.
So, when there’s an infection, the immune system pushes more lymph fluid into the area as part of the inflammatory response, and that means more swelling. But the bacteria don’t get flushed out. So, a mild bacterial skin infection, like cellulitis, can become critical quickly as it turns septic and that can be life-threatening. 

Caring for lymphoedema 

Early intervention and active treatment are key to managing lymphoedema. People with lymphoedema can continue otherwise normal activities, with proper management and care.  
Below are some important ones to keep in mind: 
  • Wear day and nighttime garments with the appropriate compression to keep the swelling in check.
  • Get exercise. Aerobic and non-aerobic exercises like weightlifting and resistance bands help work muscles, and that movement in turn helps move the lymph fluid.
  • Practice manual lymphatic drainage (MLD). This gentle massage stimulates the superficial lymphatic system just under the skin.
  • Be careful and avoid trauma to the affected area. Wear garden gloves, put on mosquito repellent, and avoid blood draws and blood pressure on the affected area.

Lymphoedema awareness 

Services for the condition aren’t uniformly available all over the UK, and that’s something that organisations like the Lymphoedema Support Network (LSN) would like to change. LSN is a national patient support charity that has worked for the past 25 years as an information provider for people living with or affected by lymphoedema.
Lymphoedema compression socks
Compression garments can help to manage the condition
Karen Friett, Chief Executive of the LSN, says the availability of services is tied to public awareness of the problem.
“Generally speaking, people don’t shout from the rooftops that they’re living with it,” says Friett, adding that the condition can be embarrassing and even shameful: “It affects their mental health and their perception of their own bodies. They want to disguise it and live a life where it isn’t front and centre in their life.”
"March 6 is World Lymphoedema Day and the start of Lymphoedema Awareness Week"
Next month LSN is hoping to increase awareness. March 6 is World Lymphoedema Day and the start of Lymphoedema Awareness Week. LSN will be running a campaign called “Sock it to Lymphoedema,” where people are encouraged to wear odd socks to raise awareness about the condition and post photos of themselves on social media.

More information 

The Lymphoedema Support Network (LSN) is a national patient support charity that has worked for the past 25 years as an information provider for people living with or affected by lymphoedema. The organisation produces fact sheets and has an information and support line (telephone: 02073514480) available 9:30–16:30, Monday to Friday.  
The charity has also just published a book on managing lymphoedema, called “Your lymphoedema—Taking back control,” which is available for purchase from their website
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