For the 400,000 people who have been diagnosed with IBD in the UK and the millions of others around the world, everyday life can be a struggle. This incurable, chronic disease includes symptoms such as diarrhoea, bloody stools, vomiting, nausea, fatigue, stomach pains, joint pain and much more.
IBD – which includes Crohn’s disease and ulcerative colitis – is generally managed through strong drugs and/or surgery. But, those living with IBD are often still left with debilitating symptoms which really affect their quality of life. IBD and its associated symptoms are estimated to cost health services around £1bn annually just in the UK.
There are a growing number of people who have an appetite for learning about how to help control their symptoms alongside the medical treatment they are already receiving. At the moment there is no one place where people can get this information or learn from others who have successfully achieved this. Anyone who wants to learn more has to go through a trial and error process themselves.
IBDrelief is a support and information platform for the people – and the people around them – who want to find ways to improve their quality of life. It will connect them, give them an opportunity to share their experiences and help them learn other ways to manage their condition, alongside any medication or surgical procedures they have had or may need.
We hope IBDrelief will help improve the symptoms and quality of life for those living with IBD, and in turn reduce the IBD-related bill for health services around the globe.
Who are we?
IBDrelief has been founded by husband and wife team Seb and Emily. Seb was diagnosed in 2008 with ulcerative colitis (UC). He spent several years on powerful drugs and, although these helped to stabilise his condition and reduce the number of toilet trips he was making, he was wary about remaining on them forever. Seb was also still suffering from many of the side effects of IBD including fatigue, muscle and joint pain, headaches and more.
Inspired by the 2012 Olympics he took up athletics and found through doing exercise these side effects improved. He started making other adaptations to his lifestyle – including introducing changes to his diet and learning how to manage the stresses of running his own business – and found his health improved even more. He managed to reduce his medication dosage and achieve remission. Wanting to share what he had learnt, and hopefully learn even more, he started to take part in conversations on social media with others living with IBD.
Seb found there were so many others who were seeking the same information as he was. At the same time he found partners, family and parents of those with IBD who were also seeking information about the condition and how they could support their loved ones. This sparked the idea for IBDrelief.
Seb owns his own web design and marketing company and Emily has a background in media and marketing. At the beginning of 2015 they decided that with their combined skills and passion to help change the lives of other people affected by IBD they wanted to make IBDrelief a reality.
They also wanted to make sure that any profits from IBDrelief were put back into the project and used to help people with the disease – that’s why they registered it as a social enterprise. A social enterprise is a company which looks to tackle social problems, improve communities, people’s life chances or the environment. Should IBDrelief become a success any money that’s left, after expenses and wages, including Seb and Emily’s, have been deducted, will be spent on IBDrelief, associated IBD projects and donated to charities.
Who is IBDrelief for?
IBDrelief is for everyone affected by IBD across the world. That includes anyone who has been diagnosed with IBD, their partners, family and friends. The plan is to provide information and resources for all of these groups to use.
Why are we crowdfunding?
At the moment everything you see on www.ibdrelief.com has been created by Seb and Emily out of their own pockets. But, building websites and paying for expert advice is expensive. They have now reached the limit on the amount of time and money they are able to put into the website themselves. Without investment at this stage they will be unable to continue the project.
What will we do with the money?
We have big plans for IBDrelief. These plans are spread out over 3 phases.
Reaching our initial Crowdfunding target would enable us to complete Phase 1 of the project. This includes:
- Finishing the map feature on the site. This feature shows where our users live and enables them to connect with others nearby so they can offer each other advice and support. We also want to include an event feature so users can add their own IBD-related events for others to view or view IBDrelief’s own events
- Creating advice from expert nutritionists and dieticians on the role food plays in managing or causing symptoms, alongside users’ own experiences
- Allowing users to create their own profiles. On their profile they will be able to provide information about what helps them, give their personal story, the drugs they are on, add their own recipes, link to products from the shop they find helpful to manage their condition and eventually link their profile to the food dairy in Phase 2.
- Adding a Q&A section where users can ask and help answer questions
- Providing detailed information on medications, how they work and reviews from people who have taken them
- Telling real-life stories to inspire those affected by IBD
- Building an online shop providing IBD-related products at competitive prices
- Hold IBDrelief social events and meet-ups for our members
Raising more than our minimum Crowdfunder target would enable us to start work on Phase 2 of the project.
- Building a recipe section with interchangeable ingredients which can be built into full meal plans
- Providing tailor-made exercises, created by experts, especially for those with IBD who may struggle with fatigue, have recently had surgery or who want to increase their weight
- Creating an IBD specific food diary which tracks symptoms alongside foods being eaten
- Carrying out regular surveys to help find trends in areas such as lifestyle, treatment, diet and medication which can then be used by IBD fighters to inform their choices and also be used by medical professionals to aid research
- Hold IBD retreats
Plans for Phase 3 of the project are still under development and we want our users to help decide what features we should build in this stage so some of the features below may change/develop.
Some of our ideas for Phase 3 so far include:
- An IBDrelief recipe book
- Fashion for those with stomas
- A platform for personal fundraising (eg to raise the money so someone can attend a retreat or pay for some private medical care)
- Information and advice on fertility and pregnancy
- Self-management section (to link in with the food diary)
- An app and directory of IBD-friendly businesses, organisations and places
- Appoint patient educators to offer support to fellow patients
When will the website be completed?
IBDrelief will be an ongoing project that will be constantly responding to its users needs so the website will never be completely ‘finished’.
However, if we reach our minimum Crowdfunder target, work on Phase 1 of IBDrelief will start straight away. We hope we will have finished everything in Phase 1 of the project by the end of 2015 or in very early 2016.
The timescales for completion of Phase 2 will be dependent upon how long it takes us to raise more funds and/or generate enough income to pay for it. We estimate that to complete Phase 2 of the project in full we will need a further £100,000. However, we would aim to break Phase 2 into smaller sections and build each feature as we raise funds. For example, if we raise a further £20,000 we may be able to build and launch the recipe section of Phase 2. Another £20,000 may then mean we can complete the exercise section.
Phase 3 will be ongoing and for this reason it is impossible to put a timescale or financial figure on it.
How will IBDrelief be sustainable?
The aim is to keep all the content on IBDrelief free for all users, forever.
This means we need to make sure the website will create revenue, and therefore be sustainable, as we won’t be charging people to access the website and its features.
Plans to generate revenue include:
- An online shop
- Working with corporate partners
- Advertising on the site
- Special events
How can you help?
1. Make a pledge. Of course we are Crowdfunding because we need money to continue with the project. If we don’t meet our minimum target then we won’t receive any of your money and we won’t be able to continue building IBDrelief. So, if you like the sound of what we are trying to achieve then please make a contribution – big or small – every penny counts.
2. Tell your friends about us. If you are unable to donate, or have already made a donation but want to do more to help, then please tell everyone you know about our campaign and encourage them to make a donation too. Tell your family, friends, work colleagues and employers. Share it on your social media accounts. Do anything that will help spread the word!
3. Sign up to the IBDrelief website to keep up-to-date with our news and progress and join our IBD map.
4. Donate your skills. We will be needing people with relevant skills to help us develop the website – such as medical professionals, experts in the fields of exercise, IBD and nutrition, copy writers, bloggers etc. If you think you have a skill which would be helpful then please email us on [email protected]