The Public Face of Lymphoedema

Although it affects more people than Multiple Sclerosis, Muscular Dystrophy, ALS, Parkinson’s disease and AIDS combined – up to ten million Americans according to LE&RN – lymphoedema remains stubbornly out of the spotlight. Many have never even heard of the chronic illness.

The Public Face of Lymphoedema

One reason for the relative anonymity of the condition is the lack of public discussion regarding its causes and effects. Despite there being so many sufferers worldwide, very few public figures have used their platform to stand up and discuss their own struggles with lymphoedema. We are beginning to see that change, however.

A global movement

Kathy Bates may be best known for her roles in films such as Misery, Titanic, and most recently on the small screen in American Horror Story but following battles with ovarian and breast cancer in 2003 and 2012, she developed lymphoedema. In 2016, Bates made a series of appearances on national television to discuss openly her diagnosis and subsequent battle with lymphoedema. Since then she has gone on to become an ambassador for the Lymphatic Education & Research Network (LE&RN) and works passionately to raise awareness of lymphatic diseases in whichever way she can.

Kathy Bates has an openness about the on-going difficulties and daily struggles associated with the disease and her approach is refreshing and eye-opening for many. In a world where individuals all too often have to cope with chronic pain in silence, opening the discussion up to the public enables a better understanding of chronic conditions and the toll they can take.

When asked why she has taken up the cause so readily, Kathy Bates stated: “When I heard about the figures, I got involved. I got upset because it was unfair. I have been asked to lend my name to a cause before and I have made it my policy not to do that, but this is the first one I’ve felt strongly about.”

“Doctors spend 15-30 minutes on the entire lymphatic system in medical school, so if someone goes to their general practitioner with swollen limbs, pain and heaviness, the doctor will have no idea what it is. So, it goes undiagnosed and the disease progresses for years and gets worse and worse. I am feeling great now. I have lost a lot of weight and it’s really helped with my symptoms. I just still have to wear compression sleeves or guard against nicks and bug bites because that can lead to sepsis.”

2016 saw a further landmark development: The United States Senate approved a bill establishing March 6th as World Lymphoedema Day, kick-starting a global movement and action plan that has seen awareness of the condition begin to rise.

In the UK, Gemma Levine, the world-renowned BBC photographer and photojournalist best known for capturing public figures such as Princess Diana, has also joined the movement. After developing lymphoedema, the swelling in her right arm forced her to put the camera down. Nowadays she has chosen to spend her time focusing instead on highlighting lymphoedema awareness and has released a series of books on the topic, as well as supporting the ‘Sock It to Lymphoedema’ campaign.

LE&RN is also proud to announce that it has welcomed two more celebrity ambassadors: Wendy Williams and Cameron Ayala. Host of The Wendy Williams Show, Williams only recently told fans and the media that she was diagnosed with lymphoedema and wanted to partner with LE&RN in order to bring awareness to the condition. Ayala is a Bachelorette contestant and has struggled with lymphoedema for several years, and although initially anxious for his story to appear on national television, is determined to work harder to bring the condition further into the spotlight.

The untold stories

Kathy Bates is not the first person in the public eye to have suffered from lymphoedema, and she almost certainly will not be the last. Looking back, we can find evidence of many different well-known figures who lived with lymphoedema but chose to never come forward and discuss their struggles.

Three-time Academy Award-winning actress Ingrid Bergman suffered from lymphoedema following a battle with breast cancer in the late 1970s. She continued to appear in films and onstage for the rest of her life, despite her deeply swollen arm that offered only a limited range of movement.

The late American politician John McCain is best known for his major role in US politics and time spent captive as a POW during the Vietnam War. McCain had a well-documented battle with various forms of cancer, the most visible of which resulted in the removal of a melanoma from across his cheek and nose. His medical records from 2003 make direct reference to the swelling that built up following this surgery, his use of massage, and the compression mask he would wear at night to help combat the problem. Though his left jaw was known for being somewhat more pronounced after the surgery, it was rarely described accurately – as facial lymphoedema.

A modern approach

In an increasingly connected world, the possibilities for spreading the word about lymphoedema are growing. From charity walks to grassroots campaigns and Instagram hashtags, there is no doubt that people are finding new and innovative ways to stand up and talk about their experience with lymphoedema.

For anyone looking to connect with other individuals who are suffering from lymphoedema, head over to LymphConnect’s community where people can openly discuss their experience. Share diet and exercise tips, or simply enjoy chatting with others who understand the highs and lows of living with lymphoedema.

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Claudia Lymphoedema patient