WORLD RARE DISEASE DAY - Pediatric and Primary Lymphedema - Secondary Lymphedema - Lymphatic Filariasis & Podoconiosis - Lymphostatic Elephantiasis - Awareness Campaign

On the 29 of February, Rare Disease Day is celebrated around the world to bring awareness to conditions that often escape notice. The common thread between these diseases is their lack of knowledge in the general public and even in the healthcare field. While rare and neglected diseases take up different spaces in the health sphere, both experience a lack of awareness and research-based funding.

This day is a push to raise recognition about these diseases, while encouraging further study and attention towards their timely treatments or final remedy. These diseases can come in a variety of forms, and there are up to around 7 000 documented rare diseases. While these diseases are considered rare, they collectively impact millions of people around the world. 

In some cases, the rarity and unfamiliarity of symptoms can lead to misdiagnosis, often causing more confusion and pain for the patient and their family. In the case of rare conditions like Primary Lymphedema, a patient’s best chance of receiving the care they need requires visiting a vascular surgeon specialized in lymphatic diseases or a high-quality multidisciplinary Lymphedema Care Center. These Centers and specialists are few and there are many patients who are misdiagnosed, undertreated or even untreated. Read more about best treatment for lymphatic oedema (Lymphedema) here. 

Additional research may open doors to new methods of treatment that are crucial to ending potential long terms disability and very severe complication that threaten diseases like Lymphedema. As the case for most rare diseases, inaccessibility to treatment due to national health financing policies, lack of availability of specialists, or limited data on the condition can cause final stage III (ELEPHANTIASIS), which means suffering disfigurement, disability, loss of income and even discrimination for those affected.  Read more about best treatment for elephantiasis here.

Primary Lymphedema is not only a rare, but also a neglected disease in many counties, specially in the world’s poorest communities. Lymphedema can also be devastating to economies, due to long term mortality rates due to severe infections or physical disabilities they can lead to, if the sickness is left untreated. Read about why the world is not treating a treatable disease like elephantiasis here.

With the help of Rare Disease Day, we can draw attention to the disparity among disease awareness, while putting names and faces to the millions that suffer from these conditions every day.

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

• FOCUS ON THE TERM ELEPHANTIASIS AND IT´S IMPLICATIONS FOR LYMPHOEDEMA 

• WHAT IS 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 FOR ELEPHANTIASIS

• 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 - 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

LYHMPHEDEMA INCIDENCE 
AND PREVALENCE
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CAMPAIGN 

For global awareness it is being asked that the 

WHO - WORLD HEALTH ORGANIZATION, 

name: 

"LYMPHEDEMA - AWARENESS & CURES"

as the World Health Day campaign 

  

  KATHY BATES

LYMPHEDEMA EMBASSADOR

SIGN THE PETITION HERE