Advocating for Those With Crohn’s Disease

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TOMIYO WILLIAMS: When my daughter was 14 years old, she was originally diagnosed with ulcerative colitis, and then ultimately she was diagnosed with Crohn's disease.

[MUSIC PLAYING] To get a diagnosis like that involving your child, it hits you like a ton of bricks.

I was used to living my life normally, as a normal teenager. And then I was diagnosed. It was really hard to go through.

As time progressed, her overall quality of life just diminished at one point. That's when it hit me, I needed to make a difference. And I said, you know, I'm interested in supporting parents in any way that I can, as well as supporting the patients.

Her GI group, they reached out and asked both my daughter and I if we would consider joining the Patient Advisory Council. So we would go to the hospital to meet with parents and patients. On a one-on-one basis, I primarily worked with parents that had children that were more critically ill, like my daughter.

The peer-to-peer communication means so much. It's a lot different than talking to a physician or talking to someone that may not be going through it firsthand. We try to be extremely transparent and discuss how certain things make us feel, because that's what they're looking for.

One of my big projects was working with the Crohn's and Colitis Foundation to pass a bill that would reform step therapy slash fail-first therapy. For instance, a doctor could recommend a specific course of treatment for a patient. However, some insurance companies require that the patient would fail a few medications first, and you run the risk of the patient becoming more ill. By reforming it, the patient could automatically go to that drug the doctor originally prescribed.

We ended up going to the state capitol. My daughter and I were able to meet with our local representatives. In March of 2019, my daughter, she was admitted. And when they were bringing her out of surgery, someone from the Crohn's and Colitis Foundation called me and told me that the bill had been passed.
It's been a fun experience seeing all the different ways that we can advocate, so I'm very grateful that I have my mom, my best friend, by my side during a time that's so hard.

Because I always felt that there was such a need for support, I created a blog. The name of my blog is The Rainbow In My Skye. My daughter, no matter what she went through, she always remained positive, and it helped me. I try to connect with the parents. I try to share my stories. Also, one of my most recent projects has been speaking at women's health events. You know, what it's like to be a mom with a child that has Crohn's disease, because being a caregiver to a chronically ill or disabled child, like, it just-- it changes everything. I didn't even realize that there were other parents that could relate to me. That's been a key factor, making sure I'm building that connection.

She used something that was hard for both of us and turned it into something helpful for other people that are also going through the same thing that we went through. It's very inspiring, and I look up to her for it.

We've done a lot of research, you know, but again, when it comes to the patient, it's not just the research. It's working with the medical team. It's so important that you find a doctor where the lines of communication are open, and that if you've got questions, they're going to be willing to answer, no matter how many questions that you have. I can't express that in words, how important that is.