WORLD NEGLECTED DISEASE DAY - Lymphostatic Elephantiasis – Lymphatic Filariasis - Podoconiosis – Lymphatic Vascular Disease – Pediatric and Primary Lymphedema – Rare Disease – Secondary Lymphedema – Neglected Tropical Diseases (NTD) - Awareness Campaign - Patient Association (Spain)

The existence of international days is to raise public awareness on issues of concern, so as to mobilize political will and resources to address problems, the specific problems that need urgent attention. Today January 30, people all over the world join to raise awareness regarding neglected diseases and call on health systems to invest in proper, effective, and safe treatment options for all, and to leave no one behind.

The slogan “LEAVE NO ONE BEHIND” regarding health issues related to Lymphedema, means that Health Systems must invest in proper, effective, and safe health care for all, whatever their cause or setting. The United Nations General Assembly endorsed a resolution On 12 December 2012, urging countries to aim towards the goal that everyone, everywhere, should have access to quality health care, and proclaimed 12 December as Universal Health Coverage Day (UHC Day) by resolution 72/138. Millions of people all over the world with Lymphedema are still waiting for proper and effective health care, and many of them are already in severe stages.

With regard to Elephantiasis, also known as late Stage III Lymphedema, can be due to Pediatric and Primary Lymphedema, or Secondary Lymphedema related to surgical interventions, chronic venous insufficiency, trauma, filariasis, podoconiosis, etc. The global situation regarding elephantiasis (Lymphedema Stage III) is far from new—and the reality for millions of people is that of suffering neglect regarding their Humans Rights to access propper effective treatment. Some lymphedema and health organizations are trying to redress the magnitude of the problem by developing cheap treatment options that do not include Compression Garments, even though these are essential for the treatment of Lymphatic Vascular Disease. Read more information on what country has the best treatment for lymphedema HERE.

Lymphedema Stage III (elephantiasis) in the majority of cases is the result of no treatment or undertreatment of lymphatic edema. Failure to treat and control the initial swelling leads later to recurrent dermatolymphangioadenitis (infectious cellulitis - DLA), progressive skin changes, external physical differences (deformity/disfigurement), and disability. Permanent swelling also affects people's lives in many other ways, such as the fitting of clothing and footwear, impair mobility, or even sexual function. The damage is not only physical but can also lead to serious economic, social and interpersonal consequences. Due to a combination of factors such as under-treatment, disability, and external stigma, people with severe Lymphedema may lose their jobs, be rejected from their communities, or have difficulty starting or maintaining social relationships. The discrimination and isolation resulting from these factors can, in turn, lead to negative psychological and psychosocial outcomes. Read more information about psychological aspects surrounding non-treatment of lymphedema HERE.

Elephantiasis (Lymphedema Stage III) can be prevented and treated in the majority of cases with Complete Decongestive Therapy (CDT), which helps reduce the edema and stop the progression of the disease. Treating the underlying condition (Lymphedema) in its early stages, with proper and effective compression therapy, prevents the progression of the disease towards its severe late stage called elephantiasis. Wearable compression garments are the most effective daily treatment and are considered the cornerstone of Lymphedema management. Even though it may seem otherwise, stage elephantiasis is not something rare that can only be found in poor or underdeveloped countries but can also be found in high-tech wealthy nations. Scientific studies highlight the importance and implications of compression therapy in controlling the progression of Lymphoedema. Read more information on what is the best treatment option for Lymphedema HERE.

Health systems must be equitable, resilient, and capable of meeting people's needs, and everyone, everywhere, deserves access to quality health services. World Neglected Disease Day is observed annually on January 30 with the aim to ensure people around the world can get the quality health services they need.

REFERENCES

(Pinch on the texts to read the following Research Articles)

SCIENTIFIC SOCIETIES

• GERMAN SCIENTIFIC SOCIETY GUIDELINE: Diagnostics and Therapy of Lymphoedema.
• THE INTERNATIONAL SOCIETY OF LYMPHOLOGY: Consensus Document.

DIAGNOSE AND TREATMENT

• LYMPHATIC MEDICINE: Paradoxically and Unnecessarily Ignored
• CHRONIC OEDEMA/LYMPHEDEMA: Under-recognized and Under-treated
• LYMPHEDEMA: From Diagnose to Treatment
• TREATMENT: Lymphedema Limbs
• LOWER EXTREMITY LYMPHEDEMA UPDATE: Diagnose and Treatment Guidelines
• BEFORE THE PROBLEM BECOMES ELEPHANTIASIS: How to Solve Lymphatic Congestion
• LYMPHATIC MANAGEMENT: An International Interest between Developed and Developing Countries, Similarities, differences, and Challenges.
• THE RISK OF GENITAL EDEMA after External Pump Compression for Lower Limb Lymphedema
• WHAT IS THE ROLE OF EXCISIONAL SURGERY IN THE TREATMENT OF LYMPHEDEMA

INFECTIONS

• INFECTIOUS COMPLICATIONS OF LYMPHEDEMA
• ACUTE INFLAMMATORY EXACERBATIONS IN LYMPHEDEMA
• LYMPHEDEMATOUS AREAS: Privileged sites for Tumors, Infections, and Immune Disorders
• MALIGNANT TUMORS: As Complications of Lymphedema

PEDIATRIC AND PRIMARY LYMPHEDEMA

• NORD: Rare Disease Database. Lymphedema
• AN APPROACH TO FAMILIAL LYMPHOEDEMA
• PRIMARY LYMPHEDEMA
• PEDIATRIC CHILDREN LYMPHEDEMA: A Retrospective Chart Review of 86 Cases
• LYMPHATIC FILARIASIS: An Infection of Childhood

LIPEDEMA / CHRONIC VENOUS INSUFFICIENCY

• Lipedema: A Call to Action!

• Lipedema: Update in the management of lipedema

• Lipedema: A Relatively Common Disease with Extremely Common Misconceptions

• Lipedema, A hardly known disease: Diagnosis, associated illness, and therapy

• Chronic Venous Insufficiency

• Chronic Venous Insufficiency: Variants of functional venous disease

Articles that may also interest you: 
(Click on the texts)

• FOCUS ON THE TERM ELEPHANTIASIS AND ITS IMPLICATIONS FOR LYMPHOEDEMA 

• WHAT ARE THE RECOMMENDATIONS TO AVOID INFECTIOUS CELLULITIS AND LYMPHANGITIS IN LYMPHEDEMA 

• WHAT IS THE RISK OF DERMATOLYMPHANGIOADENITIS (INFECTIOUS CELLULITIS IN LYMPHEDEMA 

• WHAT IS THE BEST TREATMENT OPTION FOR ELEPHANTIASIS

• WHY IS ELEPHANTIASIS A FORGOTTEN AND NEGLECTED DISEASE

• IS THERE DISTRESS ASSOCIATED WITH UNDER-TREATMENT OF LYMPHEDEMA - PSYCHOLOGICAL CONSEQUENCES

• WHY IS THE WORLD NOT TREATING A TREATABLE DISEASE LIKE LYMPHEDEMA. 

• WHAT IS THE BEST TREATMENT OPTION FOR LYMPHEDEMA

• IS LYMPHEDEMA DISABLING - INABILITY TO WORK AND DISABILITY RECOGNITION 

• INTERNATIONAL AWARENESS CAMPAIGN TO PROMOTE CORRECT TREATMENT FOR LYMPHEDEMA

• ELEPHANTIASIS IS NOT ONLY LYMPHATIC FILARIASIS 

• CAMPAIGN TO PREVENT CHILD ELEPHANTIASIS DUE TO PRIMARY AND SECONDARY LYMPHEDEMA 

• BEWARE OF NEW TERMINOLOGY DESCRIBING LYMPHEDEMA TREATMENT

• WHAT KIND OF DOCTOR TREATS LYMPHEDEMA/LYMPHOEDEMA - WHICH MEDICAL SPECIALITIES ARE RELATED TO LYMPHEDEMA

• FAST TRACK SOCIAL SECURITY DISABILITY RECOGNITION FOR CHILDREN WITH LYMPHEDEMA

• INTERMITTENT PNEUMATIC COMPRESSION (IPC) PUMP DEVICES. SERIOUS SIDE EFFECTS POR LYMPHEDEMA

• BEST PRACTICE PROTOCOL GUIDE FOR LYMPHOEDEMA (in Galician)

• A LYMPHEDEMA STORY - DOCTOR KENNETH GERSHENGORN AND THE MAUREEN DIGAN CLINICAL CASE

• WHY IS A BUTTERFLY THE SYMBOL FOR LYMPHEDEMA

• LYMPHEDEMA - INTERNATIONAL DISEASE CODING AND CLASSIFICATION

• WHAT DOES INTERMITTENT PNEUMATIC COMPRESSION PUMP THERAPY (IPC) DO, AND DOES NOT DO FOR LYMPHEDEMA. 

• WHAT IS PHLEBOLYMPHEDEMA.

• IS LYMPHEDEMA PAINFUL?

• WHICH COUNTRY PROVIDES THE BEST LYMPHOEDEMA TREATMENT COVERAGE 

• WHAT IS THE BEST TREATMENT OPTION FOR PAEDIATRIC AND PRIMARY LYMPHOEDEMA

• SPANISH LYMPHEDEMA ASSOCIATIONS – SPANISH NATIONAL FEDERATION OF LYMPHEDEMA ASSOCIATIONS

LYMPHEDEMA INCIDENCE 
AND PREVALENCE
(click on the texts) 

(世界顧みられない病デー/ Journée mondiale des maladies négligées / Welttag der vernachlässigten Krankheiten / 世界被忽疾病日 / 세계 소외 질병의 날 / Verdens dag for oversete sygdomme / Maailman laiminlyötyjen sairauksien päivä / Hari penyakit terabaikan sedunia / Alþjóðlegur dagur vanræktar sjúkdóma / Giornata mondiale delle malattie trascurate / Wereld verwaarloosde ziekten dag / Verdens dag for forsømte sykdommer / Världsdagen för försummade sjukdomar / światowy dzień chorób zaniedbanych / Dia mundial das doenças negligenciadas / Día mundial de la enfermedades desatendidas / World neglected diseases day / Всемирный день забытых болезней / Ngày thế giới bị bỏ mặc bệnh tật / วันโรคละเลยโลก / Hari penyakit terabai sedunia)