IS LYMPHEDEMA DISABLING - IS LYMPHEDEMA A DISABILITY - INCAPACITY FOR WORK AND DISABILITY RECOGNITION DUE TO LYMPHEDEMA - AWARENESS CAMPAIGN - JOBS THAT CAN AGGRAVATE LYMPHEDEMA - ORGANIC LYMPHATIC VESSEL DISEASE

To understand the underlying causes and implications of lymphatic dysfunction (Lymphedema) it is necessary to first clear concepts on what is an Organic Impairment, an Organic Disease, and a Physical Impairment.

An Organic Impairment refers to the loss of functionality of a body system, including internal organs or physiological processes, whether congenital or acquired. An Organic Disease refers to any disorder that is caused by a known physical dysfunction of an organic structure. Read more about what is an Organic Impairment HERE.

Physical Impairment refers to any physiological disorder or anatomical loss affecting one or more body systems that substantially limits a person's physical functioning, that may result from medically diagnosed injuries, illnesses, or congenital conditions, which interferes and has a substantial long-term negative effect on an individuals ability to perform normal Activities of Daily Living (ADLs).

Lymphedema is an inflammation of limbs or parts of the body caused by dysfunction of the Lymphatic Circulatory System (Organic Lymphatic Vascular Disease). It is usually due to consequences such as surgery on lymph nodes, cancer, radiation treatment, repeated infections, genetic and birth-related edema, chronic venous insufficiency, traumas, etc.

It is clear that no patient or their lymphedema is the same and neither is its progress. Some patients with limb lymphedema can easily do different degrees of physical activity, while others feel the strain and experience increased swelling with minimum effort. 

Regarding the International Classification of Functioning, Disability and Health (ICF), the functional limitations of people with lymphatic dysfunction (i.e. The Health Condition), and the recognition of disability, in the case of chronic lymphedema there may be a dual impairment. On the one hand, there is a PERMANENT ORGANIC IMPAIRMENT (i.e. The Body Function), due to failure in the lymphatic system, and on the other hand, a PHYSICAL DISABILITY may develop (i.e. The Body Structure), due to the functional deficit produced by the consequent inflammation and progressive chronic edema. Depending on the disease location and severity, patients may experience difficulties in executing activities (i.e. The Activity Limitation), or problems related to involvement in life situations (i.e. The Participation Restriction), making up the physical, social, and attitudinal circumstantial considerations (i.e. The Personal and Environmental Contextual Factors). Read more about what are the signs, symptoms, and complications of lymphedema HERE.

As for the edema, it can be very mild and hardly noticeable, or prominent with difficulty in using the swollen limb. National assessment teams evaluate people's physical impairments to assess degrees of disability and incapacity for work.

Even after volume reduction treatment and the use of compression garments, the underlying organic lymphatic impairment still persists, and over-stressing tasks may contribute to worsening the condition. Lymphatic dysfunction is a chronic disease, and people suffering from lymphedema may be eligible for disability and incapacity for work recognition when the condition affects their personal, family, social, or work level.

Lymphedema as well as Chronic Venous Insufficiency (CVI), have some symptoms that are clinically equal in severity. Venous and lymphatic insufficiency occurs when veins and capillaries are blocked or damaged, and lymph in the case of lymphedema builds up and pools in the limbs. The resulting chronic and progressive edema can make walking or movements of arms, difficult to undertake in some jobs and everyday tasks.

Lymphedema may also cause joint dysfunction, pain, and disfigurement to limbs, and depending on the body parts affected makes it difficult to move, walk, or inability to use hands effectively. The medical recommendations for lymphoedema and chronic venous insufficiency (CVI) are essential, for they are thus to prevent the progression of the disease and can represent in themselves causes and factors of disability recognition.

At the working level, lymphedema can restrict carrying out some activities of daily living (ADL) and jobs such as: lifting weights, over-stressing jobs, doing tasks that require keeping elbows or knees bent, prolonged sitting or standing, etc. Regarding work inability, there are cases where lymphedema can condition and may not permit an active working life, in the same circumstances as healthy people or without a disability. Read more about addressing disability and functional limitations in Lymphedema HERE.

Regarding the RFC (Residual Functional Capacity), if lymphedema affects the legs, the assessment may restrict the kinds of work that involve lifting weights, standing or sitting for long periods, walking, kneeling, or remaining in one position for certain periods of time. If lymphedema affects arms, the RFC assessment may limit the kinds of work that involve lifting weights, writing or typing, pushing, grasping, or anything else that requires fine movements of arms or hands. Extreme temperatures should be avoided for all lymphedema.

Concerning Orthotic Devices and disability, it is necessary to bear in mind that there are people who depend on Assistive Devices to enable them to participate actively and productively in the community. An Assistive Device is a technology that is adapted and specially designed to support, maintain, or replace a part of the body or deficient body function. 

There can be restrictions in specific occupations due to wearing compression garments, and people can be worse off in terms of work performance and career. Orthotic Devices can cause difficulties with jobs involved in precision work with the hands and fingers of the affected limb, and likewise certain restrictions regarding lower limb compression. There can also be disadvantages or discrimination to accessing some jobs due to the visible assistive device. The permanent use of Compression Devices can negatively condition and not allow an active working life in the same conditions as healthy people or without a disability.

Orthopedic Compression Garments for lymphatic dysfunction in upper and lower limbs are a medical necessity. It is crucial to take into consideration the significant role that Orthotic Devices play in managing and preventing complications associated with lymphatic impairment. Their function is to help support and control the severity of stasis overload, dermal complications, limb contour deformity (disfigurement), pain, decreased peripheral sensation, swelling comorbidity, and thus a means necessary to help carry out Activities of Daily Living (ADLs). 

When lymphedema is present in the extremities of the limbs (hands, fingers, feet, toes), a glove and toe caps are added to the compression garments. Without a glove, the hand and fingers can swell causing reduced independence or loss of dexterity. Likewise, if toe caps are not applied, the toes can become more swollen and skin breakdown can occur, and there can be further loss of toe and foot movement. In some cases, there may also be a need for Orthopedic Shoes.

Body function impairments like Organic Lymphatic Vascular Disease can require the permanent use of Orthotic Devices to function (ambulate or undertake different tasks), and this should be taken into consideration in the medical examination used for the Social Security disability or incapacity to work application and recognition. Likewise, when the person´s impairment, on the lower or upper extremities, progresses and aggravates without the Orthotic Device, this should also be part of the report. 

There are persons who, even though they need the permanent use of Orthotic Devices, have difficulty with the device in place or cannot use it, the medical professional should document the medical reasons for it. Issues regarding limitations when using assistive devices including heat, sweating, discomfort when sitting, kneeling, or resulting from the permanent all-day use, should be taken into consideration at disability or incapacity for work recognition level.

If a country's social security system does not list lymphatic system impairments, a person filing for disability or incapacity for work on the basis of lymphedema may have to rely on their symptoms being medically equivalent or similar to other impairment listings such as Chronic Venous Insufficiency, Joint Dysfunction, musculoskeletal system impairment, etc).

At the working level, patients must prove that they can no longer work at a level that Social Security considers to be substantial gainful income, and this can be accomplished by providing their medical records and vocational work history. If the information shows they are no longer able to do any of their past jobs or any other kind of work due to the effects of their lymphedema, they may be approved for disability.

Medical records must be specific enough to indicate why the physician considers that the patient is disabled and unable to work. It should indicate the claimant's diagnosed condition or conditions, the prognosis, and the physical functional shortcomings they may have like range of motion, postural limitations, and ambulatory limitations (walking, bending, or standing/sitting for long periods). In many disability claims, it may also include the results of a report issued by a physician who examines the claimant at the request of the Social Security Administration.

Sometimes, for the process of recognition of disability and incapacity for work recognition, it is necessary to call in a specialized lawyer with experience in dealing with disability and incapacity to advise on or handle the procedure, and who knows how to approach the symptoms and impairments due to lymphedema. At times, the process for recognition of incapacity for work or disability is long and tedious and may be denied or not recognized the first time. Patients should insist on a fair and equitable recognition of their possible personal, social, and occupational limitations.

IMPORTANT NOTICE 

Lymphedema is a serious chronic and progressive disease due to lymphatic dysfunction (Organic Lymphatic Vascular Disease). The clinical treatment of lymphedema is neither a cosmetic nor an aesthetic treatment. The treatment of lymphedema is to control its progression and alleviate the symptoms related to dysfunction of the lymphatic circulatory system. 

To prevent and avoid serious complications associated with treatment, such as the possible displacement of edema to previously unaffected areas when compression therapy is applied for volume reduction, patients should use highly specialized and experienced therapists. 

Professional qualification and instruction delivered remotely online are not the same as live hands-on practical instruction in the clinical training and certification of lymphedema therapists, similar to all other rehabilitation, medical, and surgical training programs, and especially for developing the necessary manual skills to treat a disease as complex as lymphedema. 

Patients should also take special care when choosing a Multidisciplinary Center of Reference for Lymphedema, as not all countries and centers provide the same treatment options. The best choice is a center of reference that provides Complete Decongestive Therapy (CDT), which is recognized as the Gold Standard treatment for lymphedema.

• Read more about what is the best treatment option for Lymphedema HERE.

• Read about what are the principal functions of Manual Lymphatic Drainage HERE.

• Read about what are the main differences between the two principal lymphedema treatment protocols HERE. 

• Read about what are the strategies for the implementation of low-cost treatment options for Lymphedema HERE.

REFERENCES

(Click on the texts to read the research articles)

SCIENTIFIC SOCIETIES

• German Scientific Society Guideline: Diagnostics and Therapy of Lymphoedema.

PATHOPHYSIOLOGY

• lymphedema.
• Biology of Lymphedema
• Lymph vessels: the forgotten second circulation in health and disease
• Lymphatic Vessel Network Structure and Physiology
• Lymphatic System Flows
• Organ-specific lymphatic vasculature: From development to pathophysiology.
• The lymphatic vascular system: much more than just a sewer.
• The unresolved pathophysiology of lymphedema.
• Lymphedema: A Practical Approach and Clinical Update.
• Coagulation in Lymphatic System.
• Regulation of immune function by the lymphatic system in lymphedema.
• Oxidative stress in chronic lymphoedema.
• Regulatory T Cells Mediate Local Immunosuppression in Lymphedema.
• Hemostatic properties of the lymph: relationships with occlusion and thrombosis.
• Secondary lymphedema: Pathogenesis
• Gastrointestinal Lymphatics in Health and Disease
• Intestinal lymphangiectasia in adults
• Role of the lymphatic vasculature in cardiovascular medicine
• The lymphatic vasculature in disease
• Lymphoscintigraphic abnormalities in the contralateral lower limbs of patients with unilateral lymphedema.
• The Prevalence of Lower Limb and Genital Lymphedema after Prostate Cancer Treatment: A Systematic Review
• Peripheral Edema

CUTANEOUS COMPLICATIONS

• The lymphatic system and the skin. Classification, clinical aspects, and histology.
• Lymphedema and cutaneous diseases.
• Lymphedema and subclinical lymphostasis (microlymphedema) facilitate cutaneous infection, inflammatory dermatoses, and neoplasia: A locus minoris resistentiae.
• Serum Immune Proteins in Limb Lymphedema Reflecting Tissue Processes Caused by Lymph Stasis and Chronic Dermato-lymphangio-adenitis (Cellulitis).
• Lymphedema and subclinical lymphostasis (microlymphedema) facilitate cutaneous infection, inflammatory dermatoses, and neoplasia: A locus minoris resistentiae.

INFECTIOUS COMPLICATIONS

• Lymphatic Flow: A Potential Target in Sepsis.
• Infectious complications of lymphedema.
• Acute inflammatory exacerbations in lymphoedema.
• Inflammatory Manifestations of lymphedema.

CELLULITIS / DERMATOLYMPHANGIOADENITIS

• Cellulitis.
• Clinical features, microbiological epidemiology, and recommendations for the management of cellulitis in extremity lymphedema.
• Challenges of cellulitis in a lymphedematous extremity.
• Diagnosis and management of cellulitis.
• Cellulitis risk factors for patients with primary or secondary lymphedema.
• Oedema as a risk factor for multiple episodes of cellulitis/erysipelas of the lower leg.
• Prevention of dermatolymphangioadenitis by combined physiotherapy.
• Erysipelas: a common potentially dangerous infection.

TUMOURS

• Malignant tumors as complications of lymphedema.
• Lymphedematous areas: Privileged sites for tumors, infections, and immune disorders.
• Lymphedema-related angiogenic tumors and other malignancies.
• Lymphedema: an immunologically vulnerable site for the development of neoplasms.
• Lymph stasis promotes tumor growth
• A retrospective analysis of Stewart-Treves syndrome in the context of chronic lymphedema.
• Stewart-Treves Syndrome

PAIN

• Congenital lymphedema complicated by pain and psychological distress: case report
• Lymphatic Pain in Breast Cancer Survivors
• Does Manual Lymphatic Drainage Have Any Effect on Pain Threshold and Tolerance of Different Body Parts?
• Lymphedema therapy reduces the volume of edema and pain in patients with breast cancer
• Quality of life in patients with primary and secondary lymphedema in the community

TREATMENT

• Treatment of limbs lymphedema.
• Nonoperative treatment of lymphedema.
• Lymphedema: From diagnosis to treatment.
• Lymphedema-clinical picture and therapy.
• Physiotherapeutic rehabilitation of lymphedema: state-of-the-art.
• Diagnosis and management of lymphatic vascular disease
• Effective treatment of lymphedema of the extremities.
• Lymphoscintigraphic aspects of the effects of manual lymphatic drainage.
• Intensive Treatment of Lower-Limb Lymphedema and Variations in Volume.
• Effectiveness and safety of Complete Decongestive Therapy of Phase I.
• Therapeutic Efficacy of Complex Decongestive Therapy in the Treatment of Elephantiasis of the Lower Extremities.
• Effects of Phase I complex decongestive physiotherapy on physical functions and depression levels in breast cancer-related lymph edema.
• Does lymphoedema bandaging reduce the risk of toe ulceration?
• Study of 700 referrals to a Lymphedema Program.
• Worldwide assessment of healthcare personnel dealing with lymphoedema.
• Földi M, Földi E. Földi’s textbook of lymphology for physicians and Lymphoedema therapists.
• Fluid Shifts Induced by Physical Therapy in Lower Limb Lymphedema Patients
• Visualization of Accessory Lymphatic Pathways, before and after Manual Drainage, in Secondary Upper Limb Lymphedema Using Indocyanine Green Lymphography
• The risk of genital edema after external pump compression for lower limb lymphedema.
• The management of genital lymphoedema
• The management of deep vein thrombosis in lymphoedema: a review.
• Lymphedema-associated comorbidities and treatment gap.

COMPRESSION GARMENTS

• A study of the advantages of elastic stockings for leg lymphedema.
• Indications for medical compression stockings in venous and lymphatic disorders: An evidence-based consensus statement.
• Medical compression stockings for chronic venous diseases and lymphedema: Scientific evidence and results of a patient survey on quality of care.
• Impact of Compression Therapy on Cellulitis (ICTOC) in adults with chronic edema: a randomized controlled trial protocol.
• Compression Therapy Is Cost-Saving in the Prevention of Lower Limb Recurrent Cellulitis in Patients with Chronic Edema.
• Occupational leg edema-use of compression stockings.

DISABILITY

• Disability and lymphedema.
• Lymphedema and employability.
• Worse and worse off: the impact of lymphedema on work and career after breast cancer
• Functioning in lymphedema from the patient's perspective using the International Classification of Functioning, Disability and Health (ICF).
• Unilateral upper extremity lymphedema deteriorates the postural stability in breast cancer survivors
• Postural Stability in Patients with Lower Limb Lymphedema
• Disability, psychological distress and quality of life in breast cancer survivors with arm lymphedema

DISFIGUREMENT

• Adjusting to disfigurement: processes involved in dealing with being visibly different
• Quality of Life in Cancer Patients with Disfigurement due to Cancer and its Treatments
• Quality-of-life and body image impairments in patients with lymphedema
• Association of lower extremity lymphedema with pelvic floor functions, sleep quality, kinesiophobia, body image in patients with gynecological cancers

QUALITY OF LIFE

• The impact of lower limb chronic oedema on patients' quality of life
• Quality of life in patients with primary and secondary lymphedema in the community
• Evaluating the effect of upper-body morbidity on quality of life following breast cancer treatment.
• Functionality and quality of life of patients with unilateral lymphedema of a lower limb: a cross-sectional study
• The effect of complete decongestive therapy on the quality of life of patients with peripheral lymphedema

PSYCHOSOCIAL IMPACT

• Psychosocial Impact of Lymphedema.
• Associations between chronic disease, age and physical and mental health status
• A network analysis of psychological flexibility, coping, and stigma in dermatology patients
• 'Abandoned by medicine'? A qualitative study of women's experiences with lymphoedema secondary to cancer, and the implications for care
• People are neglected, not diseases.
• Chronic edema/lymphoedema: under-recognized and under‐treated.
• Lymphatic Medicine: Paradoxically and unnecessarily ignored.
• Medical education: a deficiency or a disgrace.

PEDIATRIC LYMPHEDEMA

• NORD: Rare Disease Database - Lymphedema
• Medical management of lymphedema.
• Primary lymphedema in childhood.
• An approach to familiar lymphedema
• Pediatric Children Lymphedema
• Primary Lymphedema French National Diagnosis and Care Protocol (PNDS).
• Lymphatic filariasis: an infection of childhood.
• Lymphatic filariasis in children: clinical features, infection burdens and future prospects for elimination.

LYMPHATIC FILARIASIS / PODOCONIOSIS

• Podoconiosis: Clinical spectrum and microscopic presentations.
• Podoconiosis: A Possible Cause of Lymphedema in Micronesia.
• A cross-sectional study to evaluate depression and quality of life among patients with lymphoedema due to podoconiosis, lymphatic filariasis, and leprosy.
• The impact of acute adenolymphangitis in podoconiosis on caregivers.
• Neglected tropical diseases and disability-what is the link?
• Locomotor disability in bancroftian filarial lymphoedema patients.
• Neglected patients with a neglected disease?
• Neglected tropical diseases and mental health: a perspective on comorbidity.
• People are neglected, not diseases.
• Addressing Inequity: Neglected Tropical Diseases and Human Rights.
• Neglected Tropical Diseases, Conflict, and the Right To Health.

BLOOD VASCULAR SYSTEM 

• Peripheral Edema
• Phlebolymphedema
• Understanding Chronic Venous Disease: A Critical Overview of Its Pathophysiology and Medical Management
• Role of the lymphatic vasculature in cardiovascular medicine
• Communication between lymphatic and venous systems
• Phlebopathies and occupation
• Phlebopathies and workers
• Evidence of health risks associated with prolonged standing at work and intervention effectiveness
• Leg edema formation and venous blood flow velocity during a simulated long-haul flight

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

• WHY IS ELEPHANTIASIS A FORGOTTEN AND NEGLECTED DISEASE

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

• WHY IS THE WORLD NOT TREATING A TREATABLE DISEASE LIKE LYMPHEDEMA. TURNING A BLIND EYE TO ELEPHANTIASIS

• WHAT IS THE BEST TREATMENT 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 SECONDRY LYMPHEDEMA 

• BEWARE WITH NEW TERMINOLOGY DISCRIBING LYMPHEDEMA TREATMENT

• WHAT KIND OF DOCTOR TREATS LYMPHEDEMA/LYMPHOEDEMA - WHAT TYPE OF DOCTOR IS SPECIALIZED IN LYMPHATIC DYSFUNCTION - 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.

• SPANISH LYMPHEDEMA ASSOCIATIONS – UPDATED LIST – PATIENT LYMPHEDEMA ASSOCIATIONS OF SPAIN – SPANISH NATIONAL FEDERATION OF LYMPHEDEMA ASSOCIATIONS

CLICK ON THE TEXTS 
TO SEE  LYHMPHEDEMA INCIDENCE 
AND PREVALENCE

POSTER IN DIFFERENT LANGUAGES

SPANISH: Trabajos que pueden agravar linfedema / Reconocimiento discapacidad.

GERMAN: Arbeiten, die ein Lymphödem verschlimmern können / Anerkennung von Behinderungen

FRENCH: Travail qui peut aggraver le lymphoedème / Reconnaissance du handicap

ITALIAN: Lavoro che può aggravare il linfedema / Riconoscimento della disabilità

 

PORTUGUESE: Trabalho que pode agravar o linfedema / Reconhecimento da deficiência

RUSSIAN: Работа, которая может усугубить лимфедему / Признание инвалидности

CHINESE: 可能加重淋巴水肿的工作/残疾的确认

JAPANESE: リンパ浮腫を悪化させるような仕事／障害者認定

KOREAN: 림프 부종을 악화시킬 수있는 일 / 장애 인식

ARAB: الأعمال التي يمكن أن تؤدي إلى تفاقم وذمة لمفية / التعرف على الإعاقة

SWEDISH: Arbete som kan förvärra lymfödem / Erkännande av funktionshinder

DUTCH: Werk dat lymfoedeem kan verergeren / Invaliditeitserkenning

FINNISH: Työ, joka voi pahentaa Lymfedeema / työkyvyttömyyden tunnustaminen

GREEK: Εργασία που μπορεί να επιδεινώσει το λεμφοίδημα / Αναγνώριση αναπηρίας