Empowering patients to advocate for themselves: meet @kariulrich

Member Spotlights feature interviews with fellow Connect members. Learn more about members you’ve connected with and some you haven’t met yet. Nominate a member you think should share the spotlight.

JEN: What brought you to Mayo Clinic Connect? What motivates you to take part in the community?

@kariulrich: I had the honor to be given a patient scholarship to the Mayo Clinic Social Media Network Annual Conference when Mayo Clinic Connect was first introduced. I was excited that there was a place I could go to find others with my rare disease. Empowering other patients to advocate for themselves is what motivates me to take part in the community.

JEN: What about Connect makes you feel comfortable to share and to be open with the community?

@kariulrich: I find Mayo Clinic Connect to be different from other online support groups in which I have been involved. With Connect, I have confidence that my information and data is being used appropriately. Mayo Clinic Connect adheres to high ethical standards, in addition to its policies and guidelines being transparent, which is essential to me.

JEN: What groups do you participate in?

@kariulrich: You will find me mainly in Digestive Health as a volunteer mentor for patients dealing with median arcuate ligament syndrome (MALS) and occasionally on Heart & Blood Health, advocating for those with a rare vascular disease, fibromuscular dysplasia. The conditions I participate in are rare and underdiagnosed, so when patients find us, there is a sense of relief and validation.

JEN: Who has been a special connection for you on Connect?

@kariulrich: This is a difficult question to answer, as each patient with whom I interact with inspires me. One person who stands out is @jmmb. She has been a support for me with my condition, as well as a support for others. @jmmb and I had a discussion about how difficult it is to find a physician that understands the unique problems MALS patients face and how devastating it is when you leave appointment after appointment in tears due to lack of awareness and knowledge. We have a rare disease; furthermore, it is rare to find a provider who is willing to listen and learn. When you do find a provider who is patient-centered, it is indeed a gift. @jmmb’s words inspired a piece written for the Mayo Clinic Social Media Network blog Experts by Experience, “Grieving the Loss of Your Physician.”

JEN: What surprised you the most about Connect?

@kariulrich: The ability to connect with others who have my rare disease surprised me. I also am in awe of the resiliency of patients. I know I can go to my Connect family when I am scared, happy or sad, and someone will be there to encourage me through a painful moment or celebrate a success. Connecting with others who have shared experiences is different from friends and family, because there is more in-depth understanding and sense of empathy in their responses.

JEN: What energizes you, or how do you find balance in your life?

@kariulrich: Some days are more difficult than others to find balance. Oftentimes, I have to remind myself that it is essential to spend time doing things I enjoy. I love spending time with my family, from following professional motocross, to fishing with my youngest son and father, to identifying stars and planets in the night sky with my oldest son. My husband and I have rescued several furry pets with special needs, as well as a few exotic animals. This is where some of my nursing skills come in handy!

JEN: Tell us about your favorite pastime or activity.

@kariulrich: I have so many activities I enjoy, such as painting, being involved in our community by serving on the board of trustees for the Naeve Health Care Foundation, downhill skiing, and my newest passion: learning to ride horses, Western pleasure style. I believe it is essential to continue to pursue passions in life to the fullest.

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