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Lymph-what-oedema

Primary & Secondary Lymphoedema Online & in the Community

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Lymphoedema/Lymphedema

The UK spelling is - Lymphoedema

The USA spelling is - Lymphedema

Pronounced limf-o-dee-ma

According to Lymphoedema Ireland there are now more searches through Google for the spelling Lymphedema.

Lymphoedema is often shortened to 'LE'.

Primary & Secondary

There are two types of lymphoedema, Primary and Secondary.

  • Primary lymphoedema develops as a result of a fault within the lymphatic system usually as a result of genetic underdevelopment or weakness of the lymph conducting pathways.  It can affect men, women and children at any age.
  • Secondary lymphoedema is the result of damage to lymphatic pathways.  This may be the result of treatment for cancer following surgery or radiotherapy?

What is Lymphoedema?

The lymphatic system is made up of groups of lymph nodes throughout the body which are connected by a network of lymph vessels.

It works in the following way:

  • Acts as a one way drainage system transporting fluid from the body tissue into the blood circulation
  • Contains white blood-cells called lymphocytes, which fight infection
  • Removes wast products

For more information visit our page on the lymphatic system.

How does Lymphoedema Occur

It can occur as a result of infection, severe injury, burns or any other trauma that can damage the lymphatic nodes, vessels.  It can also arise as a result of the venous system not working efficiently i.e. those who have a deep vein thrombosis (DVT), varicose veins or ulcers.  Those patients suffering from lack of muscle movement i.e. those suffering from a stroke or Multiple Sclerosis may also be at risk. 

Signs and symptoms

Signs and symptoms can vary in each person however, swelling, a feeling of heaviness in the arm, leg, chest area, redness, clothing or jewellery feeling tighter than usual should all be checked out with your GP. 

With me it is always a heavy dull ache, sometimes a warm sensation and some of my friends experience pins and needles.  My symptoms are controlled with Manual Lymph Drainage (MLD) this is done at the local Hospice in the lymphoedema clinic by specialist nurses. 

Simple Lymph Drainage (SLD) I have been shown  to do at home.  This keeps my lymphoedema under control and is easily managed.  This is something we can all learn to do.  Please ask your Lymphoedema clinic to show you how.

Treatment

Lymphoedema is an incurable, life-long condition that is managed and treated through various massage techniques, good skin care, movement and the daily wearing of compression garments.

Healthy Steps

Self-management of lymphoedema is so important and I cannot emphasize enough how you must learn to help yourself.

The Challenge of Diagnosis

Not understood

  • Health problems are often underestimated.
  • Many health-care professionals do not understand lymphoedema.
  • 1 in 5 might get lymphoedema after cancer treatment.
  • 75% of lymphoedema is non-cancer related.
  • 25% is cancer related.
  • 2 times more common than Parkinson's Disease.
  • The ratio of 1 in 3 men to women

Welcome to L-W-O

Source

Source: the descriptions for Primary and Secondary lymphoedema were taken from the leaflet published by Lymphoedema Support Network (LSN) July 2014 on Recreational Exercise and Movement with Lymphoedema.  A copy of this leaflet is available free to all LSN members Tel: 020 7351 4480 or got to their website:  www.lymphoedema.org

Source: as of July 2014 LSN research suggests that lymphoedema affects at least 240,000 men, women and children in the UK.

Lymphoedema is:

Knowledge is power

Knowledge shared is power multiplied

Together we are empowered

Unanswered Questions

Personally, I do wonder how many cases are under diagnosed?

If our health-care professionals, don't understand lymphoedema, then they find it difficult to diagnose.

If lymphoedema is not part of the training for our health-care professionals, how can they devise a treatment plan?

Will the statistics change for Primary and Secondary Lymphoedema if secondary lymphoedema continues to grow? 

We are repeatedly told by our health-care professionals that there is no pain associated with lymphoedema.  L-W-O have 900 plus members that beg to differ.  Our members live with this condition.  How can someone who doesn't live with this condition tell us how we feel?

One of the most underestimated problems with lymphoedema is the mental health problems it causes.

These are questions that myself and our members on L-W-O ponder!

Our American friends call lymphoedema a disease.  In the UK we call lymphoedema a condition.

Therefore, I ask myself? If we in the UK call this a condition, then by the very term 'condition' do we downgrade the seriousness of lymphoedema. 

My personal view is because of the lack of knowledge amongst many of our health-care professionals and often their dismissive attitudes to those of us living with this debilitating condition we will struggle to be taken seriously.

Our aim is to be

Caring

Informative

Positive

Supportive

Wristbands

Abbreviations

I find that when discussing certain aspects of lymphoedema we tend to talk in abbreviations therefore some of our newly diagnosed members aren't familiar with the terms we use.

AB'S - antibiotics 

DVT - deep vein thrombosis

​EPS - Electronic Prescription Service

LE - Lymphoedema

L-W-O - lymph-what-oedema

MLD - manual lymphatic drainage

MLLB - multi layer lymphoedema bandaging

PALS - Patient Advice & Liaison Service

PMA - Positive Mental attitude

RLD - reflexology lymphatic drainage

SLD - simple lymphatic drainage

SE's - side effects

Learning Curve

This whole journey has been a valuable learning curve.  I love the tips our members bring to the group, how they talk and support each other. Whilst some days our members don't feel good, they are a very positive group. Join us, copy the link into your browser;

www.facebook.com/groups/lymphwhatoedema

We are on Pinterest

www.pinterest.com/lymphwhatoedema

 

The L-W-O journey

To read more about our journey visit:  http://lymph-what-oedema.com/independent-charity

L-W-O members frustrations

The Members Support Group on Facebook have identified the concerns, they worry about. 

  1. Waiting times for referrals to be diagnosed
  2. Waiting times for treatment
  3. Health-care professionals not aware of the risks of infection associated in patients who have had lymph nodes removed through surgery
  4. Repeatedly explaining to health-care professionals why no BP/Blood tests, injections, IVS or any other invasive procedures from affected side
  5. Clinics that are short-staffed
  6. Therapists who are stressed and over-worked
  7. Lack of trained therapists
  8. Areas of UK where there are no therapists
  9. Patients having to pay for MLD
  10. High cost of treatment preventing patients getting care

This is a selection of the worries L-W-O online support group members voice on a regular basis.  This all adds to their stress levels and as you will see on this website: 

STRESS IS NOT GOOD FOR LYMPHOEDEMA

A ladder to climb

L-W-O would like to see this website as a place for patients to come and gain a better understanding of lymphoedema.  It is important to understand that lymphoedema is not a disease or illness but a lifelong condition that all of us can learn to live with. 

Often the steps will be slow and painful but together we will climb one rung at a time.

Mixed Emotions

Living with lymphoedema

Lymphoedema takes a while to come to terms with, as you do, the more positive you can be about your condition then the easier it becomes to live with.  Please remember that lymphoedema is manageable with the right treatment.

As far as I am aware there is very little psychological help for those of us living with lymphoedema.   A support group like L-W-O is invaluable to those of us living with this condition.

Page last updated 06/04/2018