The US Senate became the first national legislature to officially recognize one of the major causes of disability and suffering in the world – lymphedema. In a unanimous vote on Thursday 3 March, the Senate designated 6 March as the first annual “World Lymphedema Day.”
Lymphedema is one of the symptoms of lymphatic filariasis, a mosquito-borne illness that has disfigured over 40 million people around the world. Filarial worms enter the body through a mosquito bite and slowly destroy the lymphatic system, leading to grotesque swelling and inflammation, commonly known as elephantiasis.
What does World Lymphedema Day mean to us at the Drugs for Neglected Diseases initiative (DNDi)? It means not forgetting the millions of neglected patients still suffering from this disease. Progress has been made against lymphatic filariasis, thanks to the mass distribution of treatments that cut the transmission from human to human. But millions of patients are already affected by lymphedema and suffer from its social and economic burden.
Patients like Tilottama Mahapatra, pictured here sitting under a tree in Odisha state in India. She is suffering from an acute attack from her lymphedema, and was in agony from the pain, swelling, fever, and secondary infections associated with the attack. Patients endure multiple such attacks every year. Many have to stop work or live hidden from their community because of the shame and stigma associated with the disease. Moreover, lymphatic filariasis also causes other horrifying symptoms, including hydrocele – fluid swelling of the testicles.
India is the world’s most affected country by lymphatic filariasis – despite the progress in mass drug treatment, over 350 million are still at risk and millions are affected.
Limb washing, good care and appropriate shoe wear are all steps being taken to care for patients, but better treatments could offer a new hope. Specialized treatments could be offered to both affected patients and to those newly infected, to prevent the development of lymphedema. Hopefully World Lymphedema Day will be an opportunity to raise some needed awareness about these unmet patient needs.
Tribute to Dr. V. Kumaraswami
Photo credit: Maneesh Agnihotri/DNDi