Author: Gaynor Leech, Founder of L-W-O
Developing the L-W-O website was challenging, frustrating and rewarding and it's hard to envisage that in September 2018 it will be five years since this journey started. My only experience of writing websites was family history where I had most of the material in front of me like birth certificates and I wrote a story around the information slowly checking out census documents and bringing life to my ancestors. The L-W-O website was totally different.
What name would I use? Those of you who have followed us from the beginning will know, when I was diagnosed, I kept saying to the oncologist ‘Lymph What?’ Much to my amusement when searching for a domain name having typed in lymphoedema one of the names that came back was ‘lymph-what-oedema’. How weird is that? Therefore, is was a no brainer and lymph-what-oedema became a reality.
The hosting package I use, made it very simple for me to design, write and maintain the website. I did not completely understand all the workings but slowly over the five years it has developed with a very distinctive style of its own. L-W-O has never been in the financial position of being able to afford a web designer and so it developed with all its flaws, unusual layouts and stock library pictures.
In the early days we didn’t have our logo, just a green banner with candles, that my GP said was "very calming"
How many pages would the website have? The hosting packages allows for unlimited pages, I started with four pages Home, Blog, Holiday-care and Skin-care and we now have 25 pages covering virtually every aspect of self-management for lymphoedema. Sadly, it never entered my head in the beginning that we would have to produce pages with Terms and Conditions and a Website Linking Policy, but this is the nature of the world we live in.
Above the main headings and there are drop down sub-headings
Two years ago, I asked one of my ‘friendly acquaintances’ to look at the website as he was a web developer. His first comment was “this is brilliant, I thought it would be crap” and he went on to say he wasn’t sure what he had let himself in for. I then asked how I could improve the website and his answer was “more visual content and get rid of the lines and lines of information”. I asked him “why?” and his answer was simple “people get bored very easily, so break information down into smaller sections, something they can come back to”. This coincided with the hosting package providing better layouts. One of the biggest changes that brought the website to life was not having to use the stock library pictures because our support group members gave permission for their photographs to be used and I started taking more photographs. Now I use as much visual content as appropriate.
Five years on we have a strong identity with a colour and logo that's easily recognised in the community and online.
The website continues to evolve, for example, the skin-care page started with lots of information on how to look after your skin with a small section on foot-care, all very important to someone living with lymphoedema. However, the foot-care section grew making the skin-care page long and unmanageable and soon foot-care became a page on its own. The same happened with the holiday-care page, the question was what happens when you can’t go on holiday but could go on a day out? Did that require the same amount of planning? Our members thought that it did, then ‘holiday-care’ and ‘going out’ for the day became different issues and therefore a new page was created. The website continues to evolve in this way and re-writes of pages also becomes a big part of keeping our information relevant.
Because L-W-O is independent I can write much more about how lymphoedema affects our lives and where we can get help. Our lymphoedema must not define who we are and there is so much we can do with a little planning to make life easier. There is a great social self-care movement that I have been privileged to be invited to in Coventry where social isolation, feel good activities are being highlighted including changing the language we use. Slowly I will be changing the language we use for example ‘diet’ has already become ‘lifestyle’ and ‘exercise’ has become ‘movement’ I sincerely hope this will give those living with lymphoedema encouragement to self-manage their condition.
Moving forward the priorities are:
- Self-management
- Empower our members
- Create a strong community that gives everyone living with lymphoedema a voice
- Change the language we use for example ‘lifestyle’ changes not ‘diet’
- Continue to work with other organisations so that, together we can have an impact
- Finally get our message out that:
'Lymphoedema exists, we exist'
