Dear New BAD UK Followers,
Welcome to our Facebook group and to BAD UK. We’re delighted that you have found us and regardless of whether you’re wondering if you have BAD, recently been diagnosed or a family / friend wanting to know more you’ve come to the right place.
BAD UK is a charity to support people living with Bile Acid Diarrhoea as well as ensuring there is earlier recognition of BAD and improved treatments for people living with it. The Charity is run by volunteers and supported in our work by Consultant Specialists with a specific interest in BAD.
We’ll be upfront and say it as it is…...living with the condition can be BAD at times. BAD affects everyone differently in terms of severity, frequency and response to current treatments available. But the key things we can all definitely relate to are the horrible painful and smelly bouts of diarrhoea, the bowel accidents, the fear of not being near a loo and the fatigue. A lot of us find the condition has had a significant impact on our confidence, self-esteem, social lives and relationships with family, friends and work colleagues. Our website, www.bad-uk.org, has lots of useful information so please do take a look at our What is BAD and Living with BAD sections.
We thought it would be helpful full to explain the confusion around the name for our condition now being called bile acid diarrhoea (BAD) rather than bile acid malabsorption (BAM) or bile salt malabsorption (BSM). It’s a bit like the marathon and opal fruits scenario where the manufacturers changed the name of their confectionary to snickers and starburst. The clinical world did the same with our condition but a lot of clinicians like the marathon and opal fruit lovers amongst us forget and still refer to the old names.
Our Facebook page is the place to ask all those questions that you want to know about, no question is silly or daft or too embarrassing. What’s happening to you or how you’re feeling is highly likely to be how the rest of us are feeling or have felt. It’s also a place to share your frustrations, we all have those off days with managing our BAD and this is a place to voice them. We just ask that everyone is mindful of their language, treat everyone kindly and respect each other’s contributions. We also ask that group members do not offer unused medication to other members. This practice is illegal and puts our status as a charity at risk.
A lot of followers are experienced BADDERs and will gladly share their tips and experiences with you. Specific medical advice can’t be gained from people on this group, these still need to be discussed with you GP or consultant, but if a common theme comes up, or an unusual question that we have not had before, our Facebook admin team will discuss this with our clinical trustees.
We also hold patient support groups, current locations are London and Coventry and we plan to add more locations this year. You can find more information about these groups in the Get Involved section of our website. We also have an online shop where you can purchase a very handy toilet card and radar key to support you accessing toilets in public areas more easily.
We hope that by being part of our community you will see that there is light at the end of the tunnel, that the symptoms can be managed and that, most importantly, you’re not alone.
The team @BAD UK - helping to make BAD Days Better