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Team David is made up of an enthusiastic team of people that organise sponsored events and high quality, fun activities, with all proceeds going to The SMA Trust, a charity focussed on finding a cure for SMA. At a recent support group meeting I listened to a few people talk about how their child or they themselves don’t want to talk about their IBD with anyone.
Another aspect to this (and I know many of you are thinking it) is why a person chooses not to talk about their IBD. For me I feel it is important we discuss IBD, for each of those not wanting to discuss IBD there will be those feeling alone & isolated because of IBD.
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Common Sense Media-provides the trustworthy information, education and independent voice families need to thrive in a world of media and technology. My instinct has always been to get involved in finding a cure, educating the public, and helping those with IBD and their caregivers deal with the craziness that has changed their lives forever.


I feel in the long run it is incredibly important we discuss it for how many other beautiful souls do we have to loose to such a life changing illness. In this infant with Apert's syndrome (acrocephalosyndactyly), note the high steep frontal bone, protruding forehead, flat midface, small pinched nose, and the downward slanting of the palpebral fissures. Hearing them relate their feelings and recalling others expressing their wishes to keep quiet about what they are going through, made me stop in my tracks and think.
Realizing there are a number of people out there wishing to remain silent, I began to question myself. I’ve heard others say they just want to feel normal so choose not to call attention to their illness.
In some ways, like depression… a silent killer that many do not want to share due to societal taboos. It isn’t until everyone has an minimal understanding of the disease will they be willing to give up their hard earned dollars to fund research for a cure. I can understand some peoples reluctance to discuss IBD but for me I feel it is far too important of a topic than to just sweep it under the rug. The acrocephaly is due to premature fusion of the coronal sutures, resulting in bilateral coronal craniosynostosis.


Again note the high steep frontal bone, protruding forehead, flat midface, small pinched nose, and the downward slanting of the palpebral fissures. Apparently there are many people with IBD out there that just don’t want others to know about it. Am I really helping people who have made a choice, for whatever reason, not to talk about it?
I believe, the more we can talk about a disease, more awareness is generated and hopefully more dollars go to research. When I speak out like a crazy person advocating for IBD, am I making them feel uncomfortable?
Or am I a welcome voice for those who wish to remain anonymous drawing attention away from them?  I am not sure yet.



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