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L-W-O Community

For those living with Primary, Secondary & Paediatric Lymphoedema Online & in the Community

What is Lymphoedema?

The Challenge of Diagnosis

Unanswered Questions

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 of health-care professionals, how can they devise a treatment plan?

How will the statistics change for Primary and Secondary Lymphoedema if the diagnoses of 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 1000 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.

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.  Which is why we need to make our voices heard.

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


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

This page was originally part of our Home page first published September 2013

It was republished as a separate page 12/04/2019

Page last updated 17/04/2019