Frequently Asked Questions on Lymphedema

written by Pernille Henriksen


What is lymphedema?


Lymphedema is an accumulation of fluid (swelling) in a body part like an arm or leg but can also be in the head, neck, stomach, or genitals.
How do you get lymphedema?
Lymphedema can be of primary cause or secondary cause.
What is primary and secondary lymphedema?


Primary lymphedema is malformation of the lymphatic system. There are many different types of primary lymphedema, and some are hereditary. Secondary lymphedema is caused by trauma or damage to the lymphatic system such as during cancer treatment, surgery, or infection.
When is it not lymphedema?


If your swelling persists you should see a doctor that can diagnose you. Only with the right tests can it be confirmed if you have lymphedema.
What tests do you need to diagnose lymphedema?
There are different tests and examinations depending on your personal situation and how and where on your body the swelling manifests. The doctor will make a clinical evaluation and ask you about your family history, any previous surgery or trauma etc. Then you might need further tests. Imaging tests could be performed such as lymphoscintigraphy, ICG (Indocyanine Green lymphography) or ultrasound. If there is a suspicion of primary lymphedema a genetic test might be offered. Each patient is different, and it is up to the specialists to determine what is necessary for the correct diagnosis and to make a personalised treatment plan for you.
What doctor should I see about lymphedema?


There are medical professionals that specialises in lymphedema such as vascular surgeons, lymphologists, physiotherapists. If you are looking for a first consultation you should, see??
Where can I find a doctor in my area?
Not sure what to answer here…this is one of the most asked questions
Lymphedema treatment


Can lymphedema be cured?


Lymphedema is a lifelong condition that currently has no cure. Daily management can reduce or/and manage the swelling and reduce the risk of complications such as infections.
How do you treat lymphedema?


There are four main pillars of lymphedema treatment. These are compression, skin care, exercise and manual lymphatic drainage. A specialist can help you find the right options for you. You could need a decongestive phase where the aim is to reduce the swelling with compression bandages so you can get into compression garments. The maintenance phase is the phase where you manage at home with your compression garments, skin care and exercise. Keeping a healthy weight is very important to manage your lymphedema.
What food should you eat when you have lymphedema?


Keeping a healthy weight is very important for your daily management of your lymphedema. Some patients express they can not tolerate well alcohol or sugar. A nutritionist can help you find the right options for you and your situation.
Infections and lymphedema


What is erysipelas?


If you have lymphedema, the build-up of fluid in your tissues makes you more vulnerable to infection. Erysipelas is a bacterial infection of the deep layer of skin (dermis) that often affects those with lymphedema.
How do you prevent infections?
It is very important that you take good care of your lymphedema. This means you need to wear your compression as prescribed, you need to have good skin care routine and taking care not to get an injury. Watch out for cat scratches, dog bites, mosquito bites, burns, or blisters and treat them immediately.  
Covid-19 and Vaccines


Can patients with lymphedema get vaccinated against Covid-19?


Yes, they can. It is advised to get your injections in the limb where you do not have lymphedema.
Does lymphedema get worse when you get the Covid-19 vaccine?


t has not been widely reported that lymphedema gets worse when you have your vaccine. A side effect has been swollen lymph nodes. Speak to your doctor to understand how this can affect your personal situation.
Does lymphedema get worse when you have Covid-19?


It has not been widely reported that lymphedema gets worse if you are sick with Covid-19
Do patients with lymphoedema have a weak immune system?


In general, patients with lymphoedema are not considered to have a weakened immune system.

Some patients with rare forms of genetically inherited lymphoedema may have weakened immune systems; you will have been told if this applies to youIn the limb where they have lymphedema, they might be more susceptible to infections and therefore they should take extra care.