Tell Your Story At The New LAM Video site

Here at LAM Action, we’re embarking on a very exciting new project, but we need your help. As you know, one of the greatest means of support for women with LAM is talking to other people who have the condition, and hearing their personal stories. We’ve been thinking about how best to get such stories onto our website. Coincidentally, the company for whom LAM patient Grazyna Dobosz works, Web of Stories, approached us with an idea. This project allows LAM patients to video record their own stories to be shared online, linked directly to our LAM Action website.

The company’s website is Web of Stories (http://www.webofstories.com). The site is divided, according to subject, into sections called “channels”. The flagship channel, “Lives”, contains short video stories of around a hundred interesting, creative and influential people, talking about their life and work. Web of Stories also has over 40 other channels including Health, Food & Drink, Poetry, Politics and Travel where anyone can tell their own story.

They have set up a dedicated LAM Action channel for us on Web of Stories. So now we need LAM patients – i.e. YOU – to tell your own story and add it to this site. These stories will then be visible on the LAM Action website, as well as on the Web of Stories website. Over time, we hope to build a wide collection of stories, from women of all ages, at different stages of LAM, from across the country. The resulting collection should be an incredibly useful resource, allowing us all to share our own LAM stories and therefore helping LAM patients and their families to learn about the LAM experiences of others. And because the stories will be publicly available, it’s also a great way to spread awareness of LAM.

Of course, the more stories we have in this collection, the more helpful it will be. So please do record your own story and upload it. It’s very simple to do – guidance notes are below.

LAM Action on Web of Stories – Guidance Notes

Form & Content

We want you to tell your own LAM story in your own words, in your own way. But here are some points to bear in mind:

The technology allows storytellers a maximum of 10 minutes to tell your story. However, according to research, viewer concentration levels fall after about 3 minutes, so the optimal length of the video should be about 3-5 minutes. If you have a lot to say, you can make several shorter recordings.

Please remember that stories will be watched by people at different stages of the disease. In particular, we expect that the stories will be of interest to newly diagnosed patients, so you need to bear this in mind and strike a balance between being honest but not alarmist.

Many of the storytellers currently on Web of Stories speak to a ‘listener’ who every now and again prompts the speaker with a question if he or she appears to be going wildly off course. The recording shouldn’t be a dialogue between you and the listener; YOU are the speaker telling YOUR story. The listener, if you opt to have one, will only be expected to ask short, relevant questions.
Some topics you might cover (but only if you want to):

- Personal details (eg. first name, age, family)
- How long ago you were diagnosed, what symptoms you had then, how you felt about the diagnosis
- How you have been since your diagnosis – any surgery you have had, any treatments you have had or are on
- How you feel about LAM now, how your family feel about it
Any tips you have for coping with LAM

We LAM ladies are great at telling our own stories in person and at gatherings. Yet women generally hate seeing themselves on video – more so than men, for some reason! Please don’t be intimidated: overcome any reluctance you might have and get recording – it will be such a help to the LAM community. Thank you in advance!

Technical

The broad principles are:

Within Web of Stories, there is a dedicated LAM Action channel.
Any LAM patient or family member who wants to record their story to the LAM Action channel can do so, either directly on their PC if they have a webcam or else by uploading their own videos. They can use any sort of recording equipment for this, including a mobile phone. However, they will need the Access Password, available from LAM Action, before they can assign their video to the LAM Action channel. This allows us to control who can record a video to be posted on the LAM Action channel.
However, once recorded and posted, videos on this LAM Action channel will be publicly available for anyone to watch; we cannot restrict who views them.
Videos in the LAM Action channel can also be cross-tagged to other relevant channels (such as the Health channel, for example).
We have no ability to edit individual videos once they have gone live, although we can remove a video in its entirety if we are alerted by users of the site that it is unsuitable.

How to upload your story

Request the LAM Action “Access Password” from Jan Johnson, Grazyna Dobosz, Gill Hollis or Clare Lauwerys.
Access the LAM Action channel on Web of Stories by clicking on http://lam.webofstories.com
If you have not already registered on Web of Stories, please register now, using a password of your choice as your individual password. You will also be asked for the Access Password.
This should take you to the LAM Action channel. Click on the option “Tell your Story”
If your computer has a webcam, the technology recognizes this and will give you two options: either to record directly using your webcam or to upload a pre-recorded video.
Follow the directions on screen to make your recording. If you are recording directly, you get an opportunity to review the video before submitting, so you can have as many takes as you want.
When you are happy with your recording, submit it. You will also be asked for some summary information about your story.
Finally, a couple of warnings based on our testing. First, be aware that it may take some time to upload your recording – far longer than the “few minutes” suggested. And finally, make sure your camera is not upside down; we all look so much better the right way up!

Thank you very much and have fun!