I was frightened to see my late uncle battling significant swelling in both of his legs when he was undergoing cancer treatment. Their swelling to about three times their usual weight caused him great suffering and mobility problems. He pointed to his visibly unhappy legs at his oncologist’s visit and asked why.
The surprising answer from the doctor was, “Oh, that’s lymphoedema, there’s nothing we can do about that, I can tell you that much.” Given the crippling effect the illness had on my uncle’s everyday life, the doctor’s blasé approach was startling.
The terrible and incurable illness known as lymphoedema captures the hidden catastrophe many cancer patients experience when their treatment is done.
Lymphoedema: what is it?
A chronic, incurable disorder, lymphoedema results from lymphatic system failure and causes too much swelling. This system—a network of glands and vessels—is vital in our body. It maintains fluid balance, supports immune system function, and filters waste materials into the bloodstream. Painful swelling results from lymph fluid being unable to drain adequately when the lymphatic system is compromised or blocked.
The lymphatic system is sophisticated and comprises every organ and tissue. Medical experts typically overlook the translucent lymphatic veins until a person is profoundly affected by a systemic issue. “You appreciate how much it does for you only when you are affected,” one professional says.
Lymphoedema's global distribution?
Though quite widespread, lymphoedema is nevertheless a “hidden disease” worldwide. Globally, an estimated 250 million people have lymphoedema, 450,000 in the UK and perhaps 10 million in the US. However, the disorder is quite underresearched and underdiagnosed. Hence, many people suffer from inadequate treatment and support.
One advocate for lymphoedema sufferers notes, “Lymphoedema can affect anyone, and doesn’t discriminate on gender, age, ethnicity, or socioeconomic level.” “It’s a common problem, but it’s also usually disregarded.”
A side effect of cancer treatments, lymphoedema, usually results from radiotherapy or surgery, which can either damage or remove lymph nodes. For example, 90% of patients with head and neck tumours experience lymphoedema, which one in five women treated for breast cancer also has. But cancer is not the only factor; other causes include genetic disorders (primary lymphedema), injuries, obesity, or infection (secondary lymphedema).
How Does lymphoedema affect people personally?
Founder of the UK-based charity Lymphoedema United, Matt Hazledine, discusses secondary lymphedema. Following a protracted case of cellulitis, a potentially fatal bacterial infection, he developed the disorder in 2011. “The infection came out of the blue, in a harrowing experience,” Hazledine notes. “The by-product of that was a quite severe swelling in my left leg diagnosed as lymphoedema.” His limb swelled to 60% above usual, adding 8 kg (17.6 lbs) of extra weight.
“At forty, it was rather life-changing,” he says. “I had to work out daily management of the condition.”
What physical and emotional effects does lymphoedema cause?
Lymphoedema seriously affects not only physical health but also emotional well-being. The disorder can cause a significant loss of movement, a disfigured appearance, and excruciating pain that might lead to isolation and melancholy. This disorder is not only chronic but also requires careful daily management, which is sometimes challenging to get given the absence of expert care.
Hazledine notes many cancer survivors have told him they “wish the cancer had taken them” since their lymphoedema becomes an even more upsetting reminder of their cancer journey. He compares his experience managing lymphoedema to “wading through thick treacle in the fog.” “They think the lymphoedema presents more of a difficulty than the cancer,” he says.
Why Do Medical Professionals Often Undervalue and Misunderstand Lymphoedema?
Though lymphoedema is a widely occurring disorder with terrible effects, healthcare institutions still underfunded and underappreciated the disorder. Oftentimes, this ignorance results in mismanagement, delayed diagnosis, and aggravation of symptoms.
Born with primary lymphedema, Amy Rivera, a nurse, battled over three decades to get a proper diagnosis. Misdiagnosed initially, she was routinely disregarded by doctors, downplaying the seriousness of her illness. “I was gaslighted by a rude doctor who said, ‘You’re going to be in a wheelchair by the time you’re 35, so you better get in what you can now,’ she says.” Rivera’s left leg was “200% larger than my right,” she struggled greatly to complete even basic daily chores as her legs grew so enormous.
Her illness finally caused her to give up her nursing profession, but later, she started the Ninjas Fighting Lymphedema Foundation to spread awareness. Rivera now controls her lymphoedema for up to six or seven hours daily.
Regarding lymphoedema treatment and access to care, where is everything right now?
Although lymphoedema generates a significant public health burden and is sometimes referred to as an “overlooked pandemic,” healthcare institutions still neglect it. The disorder is underdiagnosed, and the dearth of qualified experts causes patients to frequently have an array in locating appropriate treatment.
One consulting doctor notes that a significant problem is the lymphatic system’s lack of specific training. Although students aren’t interested in lymphoedema, at least they will have heard of and seen it and know where to send the patients,” she says.
Only five doctors in the UK specifically treat lymphoedema across two centres, and patients often must travel great distances for treatment. Many still have limited access to care; hence, they endure without appropriate medical attention.
How much does lymphoedema cost patients and healthcare systems?
Lymphoedema causes significant financial burdens for people and healthcare systems. Due to lymphoedema-related consequences, mostly connected to cellulitis infections, the NHS estimates £178m ($225m) yearly in hospital admissions in the United Kingdom. Patients with lymphoedema in the US pay over $270m (£213m) annually for hospital fees.
With enough good care, most of this may be avoided. According to research commissioned by the National Lymphoedema Partnership, appropriate therapy might cut problems by 94% and hospital admissions by 87%.
Lymphoedema treatments are underfunded even with their financial load. For example, lymphoedema sufferers with breast cancer pay extra direct costs of up to $2,574 (£2,035) annually and indirect costs of up to $5,545 (£4,384). This especially disadvantages people from lower socioeconomic origins.
Is lymphoedema undesirable to treat successfully?
If under control, lymphoedema is not a death sentence. Many patients—including Hazledine, Rivera, and Didi Okoh, a 2024 Paris Paralympian with primary lymphedema—can now correctly control their illness with the appropriate treatment and instruction. Medical education, financing, and public awareness must also change.
Living comfortably with his disability now, Hazledine stresses the need for early diagnosis and appropriate assistance. ” Many people can live well with lymphoedema,” he notes. Their self-management pattern can be shaped if they get educated, have the correct treatment plan and support from a healthcare professional.”
Still, many people lack the knowledge or means to control their illness, even in 2024. Better awareness of lymphoedema, more financing for specialized care, and more public and professional education will help raise outcomes.
In essence, what has to change for lymphoedema sufferers?
A complicated and crippling disorder far too often written off by the medical community is lymphoedema. One cannot undervaluate its psychological, financial, and physical effects on sufferers. Still, people can live well with lymphoedema with the correct knowledge, education, and treatment. Though patients like Hazledine, Rivera, and Okoh are evidence that the disease may be managed and thrived upon, the road to appropriate treatment may be lengthy and challenging.
Although the campaign for improved lymphoedema awareness is still in progress, there is hope for a better future for people living with this invisible illness as more individuals speak out and more experts commit themselves to the cause.
