For those of you that are familiar with L-W-O Community you will know my story and how I became a patient advocate, something that did not happen overnight. For those who do not know my story here is the shortened version. Late 2010 I was diagnosed with Breast Cancer through a routine Mammogram. My breast cancer was not a lump it was in the tissue it would not have been found without the mammogram at such an early stage. To all intents and purposes my long-term prognosis was good, I had a small operation to remove the offending tissue and 15 days of radiotherapy to mop up any remaining cells. I was not told was that the radiotherapy while killing off the cancer cells would cause another problem and I would end up being diagnosed with the lifelong and incurable condition of lymphoedema. At the time of my diagnosis there was little help, support, or information that would help me understand my new diagnosis. Disbelief and anger, I felt doomed. My anger turned to a passion to improve not only my life but the lives of other people who were diagnosed with lymphoedema. What is lymphoedema Lymphoedema is caused by a failure of the lymphatic system. When normally working the lymphatic system of vessels, like blood capillaries, collect fluid and particles, such as protein, fat, hormones, bacteria, and harmful cells. It then transports this ‘lymph fluid’ through a filtering system of nodes to destroy the harmful particles and returns the fluid to the bloodstream. It is therefore responsible for: 1. Maintenance of fluid balance by collection and transport of fluid from tissue spaces back to the circulation. 2. Nutrition by fat absorption from the gut and transport back to the circulation. 3. Immunity and defence by the removal of dying or mutant cells, transporting antigens and immune cells, and generating immune responses to infections. Source and further reading: https://www.thebls.com/pages/what-is-lymphoedema L-W-O Community After spending a lot of time researching lymphoedema and typing notes I decided I would start a website and a Facebook page the latter is now our public face. This was followed in 2014 by an adult support group, in 2017 our families support group and 2020 our family’s website. I started L-W-O Community with no direction, no tech skills and lots of obstacles as to why a patient with no experience apart from living with lymphoedema should start a group like mine. However, we have grown, and we continue to grow and as you will see from our campaign, we now have the support of many individuals and organisations alike. Over the last 18 months I have been comfortable in becoming a patient advocate and I love working with other patient advocates many of whom have become friends. The aim of our campaign for Lymphoedema Awareness Week and World Lymphoedema Day 2021 is to reach more people to, raise awareness, and help the public and clinicians alike to have a better understanding of lymphoedema. Living with a lifelong condition Teaches you to become an expert patient MEDICAL DISCLAIMER: Information in this video must not be relied upon as an alternative to medical advice from your clinician. You should never delay seeking medical advice or discontinue medical treatment because of information from this video. For further T&C's visit https://lymph-what-oedema.com/terms-and-conditions
