8/7/2023 0 Comments Usher syndrome cause![]() ![]() It also raised the antennae of Bella’s GI doctor. However, that anecdotal evidence was intriguing. Let me pause again to point out that there is NO KNOWN CONNECTION between IBD and Usher syndrome. So my anecdotal evidence suggested a higher frequency of IBD among people with Usher. ![]() And it seemed to me, anecdotally at least, that at least 7 of those people had IBD. But I am not in regular contact with more than a couple hundred people. You see, when I posted that blog I was flooded with e-mails from the Usher community. And 7 in 1000 people in the general population have IBD. None of the 100 genes associated with IBD is an Usher gene. 1) Were any Usher genes on that list of 100 genes associated with IBD and 2) What was the incidence rate of IBD? The answers were interesting. This led to a conversation with Bella’s gastroenterologist at MGH. In fact, there are over 100 genes that have been identified as being associated with IBD. IBD is different from Irritable Bowel Syndrome (IBS) in that IBD is genetic. I heard from a number of people who also were dealing with Crohn’s or a similar Irritable Bowel Disease. As is often the case, the Usher syndrome community came rushing to support us. Shortly after she was diagnosed, I wrote a blog post about it. My daughter, who has Usher syndrome, was also diagnosed with Crohn’s disease last year. There are NO KNOWN CONNECTIONS between IBD and Usher Syndrome. Irritable Bowel Disease (IBD) and Usher Syndromeīefore I write a word on this, I want to be clear. How important? Well, let’s look at some examples and do a little daydreaming to illustrate the impact the registry is having today and some of what we believe it can become when the financial resources become available. Because of that, we have been able to use that money to hire a Registry Director!Ī Registry Director is incredibly important because the International Usher Syndrome Registry is incredibly important. Not only did we have 80+ teams around the world raising awareness about Usher syndrome, but we were also able to surpass our fundraising goal. The Own the Equinox campaign was a huge success. ![]()
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