Live, Laugh, Lemonade: Advice from a Woman with a Rare Disease

School recess has always been the time to cut loose with some hoops or a game of dodge ball. Not for Kendra Gottsleben, though.


Growing up in South Dakota, recess for Kendra was when she would glue herself to the school building wall and watch her fellow students play.

Born with a rare medical condition called Mucopolysaccharidoses (MPS) Type VI, which affects just 100 people in the United States and is characterized by lacking a certain enzyme, the 32-year-old has spent her entire life in and out of the hospital. Before treatment, the condition also meant an early death for patients. Today she is only 40’ inches tall, suffers from a range of joint abnormalities and has to receive weekly infusions to stay alive.

Kendra could have easily fallen into a void of self-pity, anger and resentment. Instead, the exact opposite holds true. Blessed with an amazing, upbeat attitude, Kendra views the obstacles that came with her disability as learning opportunities.

Drawing from a lifetime of challenges, Kendra has given a TEDxSiouxFalls talk, as well as written two inspirational books. The first, Live, Laugh, Lemonade, is an autobiographic account of her first 30-years, from diagnosis to graduating college with honors. The second, Kendra’s Lemonade, is for educators, parents and caregivers of special needs children. In both, Kendra’s philosophy of “When life hands you lemons, turn right around and squeeze those lemons to make the best lemonade possible” shines through.

Women Fitness recently had the wonderful opportunity to join Kendra in a candid conversation on her journey so far.
Women Fitness: Introduce us to your life living with a rare medical condition called Mucopolysaccharidoses.

Kendra: Living a life with Mucopolysaccharidoses Type VI (a rare genetic condition) has continuously given me obstacles that I have had to overcome throughout childhood, young adult years, and into adulthood. I have never let those hurdles define myself or change my optimistic and positive outlook on life. I am a strong believer that circumstances and situations all happen for a reason, even when at times we might not completely see the reasoning right away.

Surgeries, pokes, needles, MRIs are just a few of the many medical obstacles of having a rare genetic condition. For me I have always allowed myself a certain amount of time to be frustrated, scared, and weak when needing to deal with them. I am careful with not letting myself stay in that negative mental space for too long. I pick myself up and put my trust in God’s hands and realize that what will be, will be and I don’t have control of the future…He does.

My refusal to be defined by Mucopolysaccharidosis Type VI is strong and will always hold true. For every hurdle I have been given, I have had countless blessings in return. These range from meeting remarkable medical staff, fellow MPS friends, speaking engagements, and so much more. I try to count my fortunes rather than the misfortunes.

Live, Laugh, Lemonade

Women Fitness: You have given a TEDxSiouxFalls talk. How was your experience?

Kendra: The experience for me was incredibly nerve-racking, because at that time I had never spoken to an audience much bigger than 40 people. I also had never been up on a stage alone or telling my story, let alone even speaking on anything at that level. Preparing how I wanted to share my message and journey was exciting as it all came together. The TEDxSiouxFalls opportunity was the spring-board into the world of sharing my story through other speaking engagements.

Women Fitness: You have also written two inspirational books, the first, Live, Laugh, Lemonade, is an autobiographic account of your first 27-years, from diagnosis to graduating high school with honors. Tell us more about this book.

Kendra: Beginning in fifth grade I had always wanted to one day write a book. It all stemmed from having a terrific teacher introduce us as students to the writing process. We had writing workshop time where we were to write and learn how to edit each other’s work to help improve one another’s writing.

As child, I had no idea what that book would ever be about, but still had dreamt that it would be entertaining to accomplished one day. So, fast-forward to nearing the end of my college career I had a friend ask me if I had ever thought about writing a book about my life and journey. After his question I began to realize that I had always enjoyed helping others by sharing my story and even though I was still young I did have a lot to share.

The aspiration with this first book was to illustrate how I have chosen to live my life with a positive outlook and determination in achieving all my dreams, despite Mucopolysaccharidoses Type VI. It describes my approach to life and how I have taken advantage of its many lessons along the way. Regardless of the sizes of the obstacles, I have attained numerous goals in my life and I’m determined to accomplish countless more.

I’m a true believer that the attitude we take in life is what assists us succeed in everything we set out to do. I have always embraced the popular motto about “Life’s Lemons,” and have always used it as a way of describing life. My hope for this book has been to provide the inspiration to always make the “BEST Lemonade possible” in everyone’s life!



The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

Post a Comment

Previous Post Next Post