Struggle Bus

As people with Celiac disease we struggle more than most people. We struggle with food. We have to eat three times a day every day of the year and at every turn there is danger.

We have to deal with social situations where food is present – which is every social situation ever! We have to worry when we go on vacation – will there be safe restaurants? What if I get sick and ruin this fantastic vacation that I’ve been planning and saving for over the course of months?

So, the need for a medication or something to help us is great.

I read on the Celiac Facebook groups about people who don’t want to take a medicine to help with cross-contamination risks. I don’t understand. Avoiding cross-contamination risks means that I can go to a restaurant and not give the waiter the 5th degree about how they prepare food. It’s going to a pot luck and eat a small amount of something prepared gluten free in someone else’s kitchen without worry. It’s Friday night at the pool and everyone is grilling out and I can eat too. It means I can go to a friends house without the conversation about how I need to bring my own food. It is going to a wedding without calling the bride beforehand about my special food needs. It’s getting a scoop of ice cream at the beach with my family. It’s being on a road trip and being able to eat at that lovely small family restaurant along the way. Just think – a world where we could eat without so much worry again.

But some people will use what happened over the weekend to me as proof that Nexvax doesn’t work. They will use it as justification for why you should not trust big pharma and there are too many chemicals in vaccines. My answer is, I’m just one person. We don’t know if I’m getting the medicine or not. We don’t know if I had gluten at the food challenge or not. We just don’t know what happened and making assumptions about what happened is wrong.

There are 150 other people around the world doing this trial and other people before us did the Phase 1 trial. I’m just one person. The other 149 people are’t posting on Facebook every day about what is happening to them. They are probably doing just fine without issue or maybe not. We don’t know. Bottom line – there are too many unknowns right now to draw any accurate conclusions about Nexvax or any medicine for that matter.

I decided to write this blog because I wanted people to know about this medicine and other medicines in clinical trials for Celiac. I felt like it was important to provide a place for accurate information instead of all the misinformation I read in the Facebook world. I want to be the voice for many of us pushing for a cure or at least something to help us live a more normal lives.

I hope that you all are getting something positive from this blog and understand that I’m just one woman in a clinical trial hoping for a cure. I’m still very hopeful. This episode is a simple bump in the road on a long journey. So, let’s keep going and hope for a smoother road going forward.

Sorry for the randomness of this post, but I’m waxing philosophical today!

One thought on “Struggle Bus”

  1. I have to say I share your dream and appreciate your sacrifice to try and make it a reality for all of us. I don’t understand why people are so against it, especially after that study was published that said we are all still getting exposed to far too much gluten in spite of our ridiculously strict diets. Again, thank you for everything.

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