Inflammatory bowel disease is four times more prevalent in the Ashkenazi Jewish community, yet no one wants to talk about it. Brigit Grant spoke to the founders of a new charity who do
When the Jewish Digest launched last June, it was discreet and without a fanfare. Some made assumptions about the name and believed wrongly that it was a new community publication. Others might not have noticed it at all. But for those who have suffered – often in secret – with Crohn’s disease and ulcerative colitis, the arrival of a charity which addresses their problems is something to shout about.
Now inflammatory bowel disease sufferers, suddenly have a platform and an organisation to turn to that recognises how isolating this condition can make someone feel. For in spite of the fact that Jewish people are the first to discuss their ailments over the Friday night dinner table, the anguish for those who live with a debilitating bowel condition find there is rarely a good time to mention it. Because IBD is such a a tough topic to talk about, the family and friends of a sufferer tend to know little or understand what it means to live with such a chronic condition.
Here, the Jewish Digest team, which includes sufferers Jonathan Jay and Deborah Eckstein, explain why their charity is so needed.
When people meet you, they would wrongly assume nothing is wrong?
Many patients with Crohn’s disease and ulcerative colitis may look healthy, but are actually living with pain, inflammation, and much more that isn’t visible. Both Crohn’s and UC are chronic conditions that can flare up unpredictably. There is no cure at present but drugs, and sometimes surgery, can give long periods of relief from symptoms.
When are people usually diagnosed and how does it impact on their lives?
IBD can start at any age, but usually appears for the first time between the ages of 10 and 40. Research shows that new cases of Crohn’s and colitis are being diagnosed more often, particularly among teenagers and children.
How does it affect you day-to-day?
IBD exists on a huge spectrum, ranging from minimal to quite invasive – no two people with Crohn’s or colitis suffer exactly the same symptoms. For some, it’s a constant struggle to keep their condition under control, however many people manage their IBD very well with medication with few flare ups or problems, so it does vary considerably.
Were you tempted to keep your condition a secret?
It makes it a lot easier to deal with if you can talk about your IBD openly, which is one of the main reasons we set up Jewish Digest – to create a platform where people can share experiences, get practical advice and feel part of a community that understands what is involved.
Is the Ashkenazi community aware of how prevalent IBD is?
Most people know at least one person with Crohn’s or colitis, so that should give a good indication of how common it is!
What are the charity’s objectives?
Jewish Digest hopes to raise awareness, reduce the sense of stigma and provide sufferers and their families with the support they need to help cope with their condition. The Jewish Digest website offers information about all aspects of IBD, lifestyle tips and advice, summaries of recent and ongoing research, together with articles from medical professionals, interviews with people living with IBD and gut-friendly recipes and ideas. Hopefully the site will help to create an IBD community where people find it easy to get information and inspiration on anything relating to Crohn’s and colitis. We are also extremely lucky to have just received funding to enable us to set up an IBD helpline, so on Wednesday and Thursday evenings we will have an IBD nurse available to answer any questions, either online or on the phone.
Is there any other charity like this outside the community?
We have collaborated with Crohn’s and Colitis UK, a national charity, to provide wide-ranging information about all aspects of inflammatory bowel disease. We have links on our website to the Crohn’s and Colitis UK website as they have a huge amount of resources available if people want more detailed information. We also have a useful links page on our website for recommendations of other resources available.
Why is it so important to have something like Jewish Digest?
When someone is diagnosed with IBD, whether it is yourself or your child, it can feel very daunting and overwhelming. Jewish Digest hopes to make a real difference to those who live with the ups and downs of an IBD condition by providing information, support and advice to deal with the everyday challenges it brings.We want people to start talking about their IBD and not have to suffer on their own and, in the future, we want to host more events and raise awareness still further. Ideally, we would like to be in a position to fund research projects that will eventually find a cure.
The official launch of Jewish Digest charity is on 24 February 2016 at 9pm, when Mr Richard Cohen, consultant surgeon at UCLH will speak about: Chicken Soup: Jewish Penicillin? Diet, lifestyle and disease prevention. To reserve a place, please email firstname.lastname@example.org To keep up to date with all the latest news, visit the Jewish Digest Facebook or Twitter pages and sign up for its email digest via www.jewishdigest.org