Swelling in the arms or legs may be lymphedema; know the disease

A swollen leg or arm may not be a simple injury or a passing problem. These two symptoms are common to lymphedema, a chronic disease whose treatment fails to bring a cure to the patient, but improves their quality of life.

The condition arises because of a disorder of the lymphatic system that cannot completely absorb the lymph, fluid present throughout the body – it is this accumulation that causes excessive swelling of the limbs.

The complication generates several problems for patients, such as difficulty in locomotion. Because of this, a law was passed this Tuesday (22) in the state of Rio de Janeiro that considers a person with lymphedema as someone with a disability. To enter into force, the text still needs the sanction of Governor Cláudio Castro (PL).

The text had the participation of Abralinfe (Brazilian Association of People with Lymphedema and Families), a newly created initiative to give greater visibility to the disease.

“It’s a law that came to promote accessibility and raise rights for patients with lymphedema”, says Bruno Socolik, one of the founding directors of the association. According to him, there is already an initiative for a similar law in the state of Minas Gerais and the idea is to make a proposal at the federal level soon after.

The diagnosis of lymphedema is usually made through the patient’s clinical history. However, the disease is still underestimated by the medical community, says Bernardo Batista, a plastic surgeon at AC Camargo Hospital and a specialist in lymphatic microsurgery.

“Awareness about lymphedema has increased, but it is still a very neglected diagnosis”, says the doctor.

This delay in diagnosis only worsens the condition of patients, as they have late access to treatment, which mainly involves the use of bandages that compress the limbs and physical therapy to prevent swelling in the affected areas.

Another dilemma involving therapy is that the disease is chronic, and some patients cannot understand that care needs to be constant.

The disease still has differences depending on its origin. One of the types is the primary, rarer, which usually results from a problem in the constitution of the lymphatic system. The secondary type is the most common: it occurs when there is an external aggression to this system, as in cancer treatment.

“Cancer treatment often involves resection [remoção] of the lymph nodes [gânglios linfáticos]”, explains Baptist.

When this happens, there is an involvement of the lymphatic system, since the lymph nodes are important for the adequate absorption of lymph, which can then cause the appearance of lymphedema.

One of the types of cancer that fits this scenario is breast cancer. Batista explains that, on average, 20% of people undergoing treatments for tumors in this region develop secondary lymphedema.

Because this type of cancer is one of the most common in women, the incidence of lymphedema is also higher among them.

Data from the Inca (National Cancer Institute) estimate that this type of tumor is the second cancer with the highest incidence in this population group — the first being melanoma, whose treatment can also cause swelling in the limbs.

Lawyer Fernanda Gueiros, 38, is one of the women living with the disease in Brazil. Her diagnosis was made 19 years ago. One of the main issues she reports is how the treatment impacts her everyday life.

“Everything needs logistics to make it work. When I wake up, I have to bandage myself all over and do a physical exercise, for which it is necessary to take the bands off and then put them on. It’s complicated”, he says.

In addition to the difficulties that the treatment itself brings, Gueiros believes that in Brazil there is still no adequate structure for those who need to deal with the disease.

One example is that in other countries, she says, flat-knit garments, a “strong material that retains the limb but maintains mobility”, can be found in various sizes and made to measure. Here, however, only small and pre-defined sizes are available.

Gueiros is also one of the founding directors of Abralinfe. She explains that the idea of ​​bringing together patients to claim visibility for the disease is old, but the project to formalize the association itself had its first meeting only in 2020, during the pandemic.

“We seek with the association to draw more attention from the authorities to the situation of people with lymphedema in Brazil”, he summarizes.

Techniques innovate the treatment of lymphedema

Even with these difficulties in relation to the disease, new initiatives in the treatment of lymphedema bring improvements to the quality of life of patients.

Batista explains that, in addition to physiotherapy and the use of compression garments, three types of surgeries have been developed in recent decades and are already being applied in some Brazilian medical centers.

One of them is liposuction, indicated for patients in advanced conditions and who have a large amount of localized fat in the limbs affected by lymphedema. Under these conditions, an operation to remove residual adipose tissue is important, says Batista.

“We do liposuction to make the leg more similar to the other, to remove this excess tissue that has formed”, he exemplifies.

The second surgery involves bypassing the lymph that is paralyzed by desiccating a lymphatic vessel and a subcutaneous vein (just under the skin), creating a connection between that vessel and the vein.

“[Isso é realizado] for us to divert this lymph that is dammed there into the venous system”, he says.

The results of this second type of operation are promising, according to Batista: the mortality rate is low and it is also visible that patients start to swell less, having less dependence on compression.

The last operation is lymph node transfer. It consists of moving them from a region of the body that does not suffer from lymphedema to one that does.

The innovations in surgeries, however, do not indicate that the patient will be completely cured and that he should stop worrying about self-care, highlights the specialist.

In fact, says Batista, it is extremely important that the patient continues to take daily measures to reverse the adverse effects of the disease, especially because these surgeries are only performed when it is perceived that there is a previous level of adequate compression.

“An optimization of compression in the preoperative period is important, because these patients will depend on compression afterwards, including to optimize the result of the surgery”, he says.