IBD Shorts. I have a lot to say but not enough time. Frustrations, Exciting Research, Traveling with IBD.
Frustrated and Working Hard to Raise Money and Awareness for IBD
I feel like I am working very hard to raise money for IBD research to keep our donations to our beneficiaries at the level that they are used to. I feel like I’m working very hard to connect with the needs of patients and families coping with Crohn’s disease and ulcerative colitis. I feel like I’m working very hard to raise awareness about these diseases, which will help bring in more funds and reach more people who are in need. I have been feeling like something is missing, like there is money and help out there, but I’m having a hard time accessing it. Sometimes I want to scream at the top of my lungs that we are here, that Connecting to Cure Crohn’s and Colitis has been here for over 10 years, and we are a grassroots organization with very little expenses, and the money we raise has made a huge impact on the IBD community. Maybe you can tell that I feel a little frustrated about getting our message across. I keep going back to the ice bucket challenge for ALS several years ago, and how viral that went. Obviously, there are so many diseases and conditions that need attention and ALS is devastating. It’s not that I want to do something that has to be as widespread as that, but Crohn’s and colitis are so invisible, so misunderstood, so underfunded, and people don’t realize how debilitating they can be for a large percentage of patients, especially those that have severe disease. Especially for people who were diagnosed under age 6, it tends to be more aggressive. It is not only the patient that has to live with the unpredictable quality of these lifelong illnesses, but family life is forced to change course if a loved one is diagnosed. For parents, for moms, the caregiver burnout, stress and eventually their own health problems, are very common. Yes, it’s true that some people have mild to moderate disease, respond to medications, and even if they’ve had surgery, they continue to have a healthy life and I am happy that not everyone with IBD is affected so severely. But unfortunately, it’s a fact that some people struggle more because medications don’t work or they’ve had complications from surgery or any number of things including access to the care that they need, equity issues, and so much more. I am not citing science or statistics here, but you can look them up. Most of the medications available have a less than 50% chance of inducing remission. Ok, rant over.
Presentation by Marla Dubinsky and her Team at Mount Sinai
We recently hosted a small talk with Marla Dubinsky and Elizabeth Spencer of Mount Sinai to get an update on how our funds have been used. We invited some of our donors and anyone interested in learning more about the research to attend. I always feel inspired after hearing a doctor speak about what they are doing and the progress they have made. This was an excellent talk and specifically they presented about precision medicine initiatives that are actually coming into practice. We have been hearing about this for so long and their recent research showed how to implement this with each of their patients, and the benefits it is having. Here is a link to the summary. It is really fascinating and worth your time to read the summary and the published papers.
Traveling to Japan with Lowell
We went to Japan recently, and it was the first time that Lowell had been out of the United States. I know that’s not a huge deal and it’s a privilege to be able to provide that for him. We are in a demographic of people who often travel out globally and it’s always been something that I wanted to do with Lowell, but with his complicated medical history, it always seemed daunting. This trip seemed like it would be a good time as he has been fairly stable and I thought exposing him to a totally different culture would be positive experience. And it was! Of course, it was very challenging to get together. I didn’t realize that Japan requires all kinds of approvals to bring in even regular, prescribed medication. We also had to bring his TPN and IV fluids, and those needed to be handled in a special way for traveling. Again, most people don’t realize that going on a trip which is often stressful anyway, is very hard when you have a chronic illness. Lowell also has food allergies mostly to dairy which perhaps is a little bit easier in Japan but it’s still causes concern especially when it’s hard to read the ingredients.
I found Tokyo to be a very welcoming place. The people are very civilized, helpful, they don’t talk on their phones everywhere, the streets are clean, you have to carry your garbage back to your hotel, or your home, and I didn’t notice anyone yelling at each other in cars. It’s obviously a very populous city but it runs very smoothly. The huge subway system is fairly easy but, well maybe not. I did get lost in a couple of times and panicky that I was not going to get out of one of those massive underground stations that have restaurants and shops, basically like an underground mall.
I made it out and here I am ranting about IBD and C to C! We need more attention and money. The research we are funding is improving treatments and patient outcomes. Lowell was able to travel out of the US. I wish people in LA did not talk on their phones everywhere all the time in public, and that the lady who yelled at me today because the lane I was in was closing so I had to to switch into hers, didn’t yell at me. Thank you for listening.
