Claire 4 Rare – Jenna Zeihen: Reigning Miss Kenosha with A Purpose

Hello everyone, and welcome back to Claire 4 Rare! I am so excited to share a very special story with you this month. Believe it or not, I met this person for the first time almost a year ago on National Rare Disease Day! We did not plan this but laughed together when we realized that it was our day. Though I’ve only known her for a short while, she is a true beacon of positivity, strength, and compassion. Introducing my friend, Jenna Zeihen.

Kenosha, Wisconsin’s 2022 Miss Kenosha, Jenna Zeihen, dazzled the judges and the crowd with her beautiful vocals and stunning dresses back in February of 2022. However, what really made Jenna stand out amongst the contestants, was her story.

Jenna Zeihen never considered herself a “pageant girl.” She decided to compete for the Miss Kenosha title for the first time in 2019 out of her desire to do something crazy. Her spontaneity led to her becoming 1st runner-up at that year’s pageant. This was more than Jenna had ever imagined possible, and she planned on competing again the following year. However, the new year brought new challenges for Jenna. Her already questionable health took a drastic and severe turn.

Throughout her entire life, Jenna has dealt with strange symptoms and even stranger allergic reactions to foods and medications. After hundreds of tests, on-and-off psychosis, and misdiagnoses, Jenna finally received an answer to her ongoing medical odyssey. It was determined she had a rare disease called Mast Cell Activation Syndrome (MCAS). Her battle with this rare immunological illness gave way to a feeling of defeat. However, Jenna is not one to back away from a challenge, no matter how daunting it may seem. She moved through this chapter of her life gracefully and gained a new perspective. Jenna so eloquently shared with me, “People are suffering in two parts. The first part is the illness itself. The second, and in my opinion, more deadly part, is the pain that comes from being abandoned, disregarded, neglected, or ignored by medical professionals.” Jenna’s journey to a diagnosis was long and painful. She understands the frustration, uncertainty, and sleepless nights. She knows what it’s like to feel ignored by the people who are supposed to be helping. Because of this, advocacy is a cause that has become very near and dear to her heart, and on top of all she has done and all the positivity she has spread throughout her Miss Kenosha reign, Jenna continues to spread awareness on this topic. “I want to continue to advocate for the importance of not only using our voices but helping others have the words and roadmaps of advocacy.” Jenna’s compassion for others who suffer from a rare disease is something I’ve had the privilege of witnessing up close. She greets everyone with open arms and a beaming smile, but that smile is just a little brighter when she’s with a fellow rare disease warrior.

Jenna’s reign as Miss Kenosha is winding down and she can’t help but reflect on all that she has accomplished and learned. “My time as Miss Kenosha is coming to an end, but everything our community has taught, what Soul Space has taught me, and what going from feeling silenced to feeling heard has taught me will continue to be my guiding light throughout the rest of my life.”

If you are living with a rare disease or know someone who is, please contact me at claire.bevec@harmony4hope.org. I would be honored to share their story here! If you don’t feel ready to do so, that’s ok too. I would be so happy to just meet and chat with you. I understand sometimes it’s hard to find someone to talk to who also knows what living with a rare disease is really like. We’re rare, but we’re there!