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The 9 Year Cycle

The 9 Year is the end of an era, and for L-W-O Community the start of a new era.

Who would have thought in 2013 that when I first launched L-W-O (lymph-what-oedema), through my frustration at the lack of information and worse still misinformation about lymphoedema, that we would evolve and grow into the positive community that we have become now?

In 2013, I could never have imagined that the age of sixty-two, when most people are heading towards retirement how my life would change. It certainly has been a rollercoaster, on my emotions, anger, frustration, tears, tiredness, overwhelming elation, gratitude, and a sense of achievement.

Breaking down the barriers and reluctance of those who struggle to embrace online communities is truly momentous for our community. From those early days when I was excited that thirty-seven people joined us in one month, to the 4,500 plus community we have become.

We are building a strong UK base and much to my surprise stretched far beyond our shores giving L-W-O Community an international following and voice.

Whether you belong to a lymphoedema community or other community that supports or shares your interests, online communities are thriving, and patient empowerment has become much stronger.

Digital Health and Technology Enabled Care

We are living in uncertain financial times, Digital Health and Technology Enabled Care are not new concepts and I fully acknowledge that they do exclude many. However, through our online communities, now more than ever, it is important to give our members and the wider patient community, the tools to self-care.

Everything I write or design is based on mine and our members experience. We do this successfully through our website, posters, and social media. Not only do we provide support, information, and signposting, but we encourage our members to talk about living with lymphoedema. Engagement with our members has reduced self-isolation.

L-W-O Community provides a platform to speak to others in a similar situation and yes, members are allowed to rant without the fear of judgement.

I understand that we are all protective of the individual communities or organizations we create however, the time has come to reach out and work together. Community engagement is important for those of us who live with lymphoedema and is one of the most powerful tools we have because it allows our voices to be heard.

While we will always encourage supported self-care from healthcare professionals, we realise that sadly, this has diminished as a direct result of Covid. When we don’t have the answers, we signpost to respected organisations like the British Lymphology Society, Lymphoedema Support Network, or International Lymphoedema Framework.

Patient empowerment is important to our community and by recognising we all have a part to play, then together we will reach our common goal of not only raising the profile of lymphoedema but understanding the significance of lymphatic health.

The Connexion

Have you ever wondered where L-W-O Community operates from? The answer is from home, and I call the room the Connexion, firstly, because it connects to my dining room and lounge: also, because it was once a conservatory that now has a solid tiled roof, making it a permanent fixture and secondly it connects to our garden.

When my grandchildren where small, my husband designed and built a countertop, ideal for young minds to craft, paint, or have their meals from. When the family gathers for a meal or party, it also makes for a great table to serve food from.

Day-to-day, it is my office desk, accompanied by my laptop and phone. As a 4500 strong community; people might assume that I have a huge team and that I get paid, but I do not.

I provide my time and skills free of charge, because of my passion to help the Lymphoedema community. Our Facebook page has two wonderful volunteer moderators, Sue, and Jackie, but I do the rest. This involves all the administration, content writing, graphic design, website design, social media, video creation, and website design.

Whenever possible I attend courses and webinars, to increase my knowledge of the lymphoedema community that I am so proud to be a part of.

On a personal level, my nine-year journey has been one of self-discovery. I am learning not to waste my time and energy worrying about those that try to put you down or worrying what other people think.

Listening, sharing ideas, and talking to others in the lymphoedema community has given L-W-O Community the strength to push for more community engagement.

L-W-O Community continues to move forward and to each and every one of you, who lives with lymphoedema we say, “You have a voice”.

What we call the beginning is often the end. And to make an end is to make a beginning. The end is where we start from. ~ T.S. Eliot

I run L-W-O Community on a shoestring, and I am not immune from the rising costs of running this website and other associated costs. L-W-O receives no official funding, no one receives a salary. Our two volunteer moderators and I give our time freely.

No amount is too small, any donations we receive are very much appreciated. Please donate so that, we can continue to support, empower, and raise the voices of those of us who live with lymphoedema through education and information.

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