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This Week in Crohn’s: November 02, 2012
This week’s Crohn’s update includes Butt Baskets for girls who are post-op, an Alexis Blackburn update, and scientists linking bacteria and Crohn’s in young patients.
Girls With Guts Give Back With New Fundraiser for Post-Op Survival Kits
It’s been a busy week for the Girls With Guts Team. First they featured a guest blog written by the one and only Ally Bain — she’s the gal responsible for the Rest Room Access Act. And then the big announcement happened. Girls With Guts partnered up with Groupon Grassroots to start raising funds to go toward Butt Baskets.
You’re probably wondering, “What’s a Butt Basket?” Well according to the GWG team, “We’ve got two types of Butt Baskets, one for j-pouchers and one for ostomates and in these ‘surgery survival kits’ we’ll be including tips on recovery, products to make the process go better, and a few things in there to make patients smile.” It costs about $30 to create and send the basket, and it looks like the team is off to a great start.
When the announcement for the Butt Baskets went out a few days back,
one sponsor had agreed to match funds up to $300. At the moment a couple more
companies have also contributed, and at the time of publishing over 150 people
have also donated.
Here’s How You Can Help
That’s a lot of Butt Baskets — way to go GWG! If you’d like to donate, there is a little under two days left and you can do so at www.groupon.com/deals/girls-with-guts. If your company would like to contribute, you can contact the GWG team on Facebook or their website.
Matt Light Sheds Some Light (pun intended) About His Battle With Crohn’s
First off, this interview with Matt Light that aired on New England Cable Network was great. It’s not every day that a professional athlete will openly discuss something of such a sensitive nature like IBD. Now that he’s retired, Light, a former linebacker for the New England Patriots who is now an ESPN analyst, talked about his disease and what raising awareness means to him and the IBD community.
This is one of those interviews that parents of IBD patients who are involved in athletics should watch. Especially those in need of a little faith restoration that your kid can battle through this disease and conquer anything (like 3 Super Bowl Championships).
Update on Alexis Blackburn
Some of you may remember and may even have been following the story of Alexis Blackburn — the perky-looking child hooked up to IV’s just a day after having her colon removed and receiving a life-saving ostomy — whose picture in the hospital’s playroom a day after her surgery went viral. And within 3-days post-op, she received 136 cards thanks to Reddit users. That’s the one.
Recently, the courageous five-year-old and her parents headed back to the hospital for a revision to her stoma. She and her family are not quite ready for take-down surgery yet; they would like her to enjoy the holidays and upcoming birthday without complications or worry. If you’d like to follow updates or subscribe to the RSS feed, Alexis’ mother updates when she can and is happy to talk to other parents of children facing the same battle. You can find her blog here, at http://tarablackburn.blogspot.com/.
Researchers in Ontario — Inflammatory Bowel Disease on the Rise, Especially in Children
Canadian news service, The Star relayed information from a recently released report from the Crohn’s and Colitis Foundation of America Canada, “the number of kids under 18 living with chronic disease has increased by about 50 percent, rising from 1,034 in 1995 to 1,621 in 2005.” Researchers are pointing out that “this is no longer a disease of adulthood.” They also use this as the foundation behind why there needs to be more research performed, especially in the pediatric world.
These findings are not meant to set off alarms… rather it’s an indication of the rapid improvement in regard to healthcare screening, procedures, and provider care. In other words, there were more than likely just as many sick children and adults, but the tools to diagnose were not nearly as concise as they are now; the more technology improves, the more care can be enhanced. And of course, research is needed to continue to halt the disease and cure it if possible.
Attention Pregnant Women on Disease-Modifying Anti-Rheumatic Drugs (DMARDs)
Researchers have found a correlation between DMARDs being used during pregnancy and the slightly increased risk of developing preeclampsia. Since Rheumatoid Arthritis (RA) is an inflammatory disease it can occur not only on its own, but can also impact Inflammatory Bowel disease patients as well. As most IBD patients know, they are more susceptible to other inflammatory disorders/diseases.
Researchers began to look at these findings since RA and Lupus patients are prone as it is to developing preeclampsia during their pregnancies. The use of the drugs were found to only provide a slight increase in risk but it is still necessary to note and inform patients. The article goes on to explain the development of the hypothesis and its findings, which you can find here.
71 New Genes Identified in the Hunt for IBD DNA
Genetic Engineering & Biotechnology News has some exciting news to share — scientists recently identified 71 new genes that are associated with IBD. So the current count of potential IBD related genes is now sitting at 163. This breakthrough is important because, the researchers are using these identifiable markers to see which genes are most commonly present among IBD cases, and using the information to drill down the information even more to see which correlate to Crohn’s versus UC, and which ones also overlap into other chronic autoimmune diseases.
The information provided by the study is also showing that researchers are finding a causal relationship to IBD —bacterial response.
Genetically Engineered Bacterium Gives Researchers Hope!
It sounds like something out of a movie plot. Scientists engineer a form of bacteria to eat other bacteria and then something happens out of the ordinary. But in this case, something good happens. The LA Times is reporting on a report published this week in Science Translational Medicine, regarding biotech-engineered bacteria, a bacteria and protein found specifically in the gut, and how this newly developed bacterium can soothe inflamed human gut tissue samples and also lab mice with IBD.
Bacteria May Be Culprit to Causing Crohn’s in Pediatric Cases
A recent U.S. News & World Report article released data found from researchers regarding different strands of bacteria being found in newly diagnosed children than adult cases. The data revolves around 19 children with Crohn’s versus 21healthy children. Researchers were able to find that in children with mild to moderate forms of the disease, the patients had a specific type of proteobacteria, which include E. coli and Campylobacter concisus. The involvement of bacteria is critical, because researchers may be able to nail down an antibacterial agent to treat the cases in these newly diagnosed patients.
Future Probiotic Looks Like It Can Deliver Elafin and Shows Promise to Treat IBD
ViThera Pharmaceuticals, Imc, is developing what’s called a novel therapy for a probiotic that will work as an anti-inflammatory agent. This is terrific news, as most anti-inflammatory drugs fall under the steroid category and cause side effects with long-term consequences. The probiotic will deliver Elafin, “a protein designed to protect human mucosal tissue during inflammation.” So far the pre-clinical studies look solid, so that gives the pharmaceutical company a mission to expand the studies and move forward to bringing the probiotic to the public.
To learn more about ViThera, visit www.vitherapharma.com.
Do You Believe Ignorance Is Bliss? New Study Says for IBD Patients It Is.
According to a recent study performed in Australia, 260 patients located in Sydney were linked to higher anxiety levels and also having a higher level of knowledge about their disease. This data was collected through what is called a Crohn’s and Colitis Knowledge Score. Other indicators also found females had higher levels of anxiety. This was only a short blurb posted on 6minutes.com as the rest of the information is only available to Australian Registered Health Practitioners.
Depression Common Among Elderly With IBD
A recent study evaluated 359 patients aged 65 years or older who have IBD. The patients had to complete a 15-question survey on the geriatric depression scale (GDS). They study was partly sponsored by the CCFA. The goal behind the study was to add information to the elder community. Not much exists pertaining to the link between IBD, depression, and the elderly.
Looking for Ways to Raise Awareness for IBD, Help Raise Funds for a Cure, and Meet Others Who Go Through the Same Trials You Do? Get Involved!
Here is a list of events you can get involved with to help raise awareness, funds and endorphins:
Get Your Guts In Gear (GYGIG)
Each ride averages 70 miles a day and has 2 overnight camps. During the Ride, you will receive support from GYIG staff and an all-volunteer crew. You will also get to participate in an opening ceremony, as well as be provided with meals and route support, including fully stocked rest stops, sweep vehicles, and baggage transport between camps. In order to participate in the 2-day long ride, the requirements are an $85 registration fee and fundraising of at least $1,250. For more info you can call 1-718-875-2123 or e-mail the GYIG folks at email@example.com.
Team Challenge is the CCFA’s endurance training and fundraising challenge. Participants can run or walk 13.1 miles or train for a triathlon or cycling event while helping to find a cure for Crohn’s disease and UC. Visit the http://www.ccteamchallenge.org/ page to determine which event you’d prefer to participate in and then go from there. If you aren’t sure about forming your own team, that’s okay they can help hook you up with one. Pretty cool right?
This is another CCFA event involving walks held all over the nation. One of the great things about this event is that is usually held in the same place at the same time, every year. This means that participants can fundraise all year long; up until the very day of the walk. The CCFA provides team captains and their fellow walkers with fundraising ideas and support. So if you want to go big on your fundraising efforts you will have the help of the CCFA to guide you. To learn more about the Take Steps Walk visit their FAQ page or fill out their Request More Information Page.
Have a favorite charity that we didn't mention? Send us your suggestions at: firstname.lastname@example.org