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The Healing Power of Movement: Lena’s Rare Disease Story

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By Lena Z.

I was born with two rare diseases: medullary sponge kidneys (MSK), a birth defect where changes occur in the tiny tubes inside a fetus’ kidneys, and hypermobile Ehlers-Danlos syndrome (hEDS), a progressive connective tissue disorder. Since both diseases are genetic, my journey started when I was born. However, I didn’t experience my first symptoms until I was a teenager. 

When I turned 18, I got my first kidney stone, which had to be surgically removed. I’ve spent the past 27 years dealing with recurrent stones. In 2016, I was diagnosed with hEDS after many years of searching for the underlying cause of joint pain, instability, heart defect, gastro dysfunction, and extensive allergies just to name a few. I had to quit my full-time job as an accountant to take care of my health. I subsequently opened my own accounting practice, where I work part-time.  

The same year as my hEDS diagnosis, I found a support group and joined forces with a few others with EDS to open NH Rare Disorders Association, a non-profit dedicated to education, advocacy, and support in New Hampshire. I have since learned that I am the third generation with hEDS and my son is now the 4th.

In 2022, I opened a Pilates studio and started my journey to become a certified Pilates instructor, where I now help others with hEDS find movement in their lives. Building strength and stability to support failing connective tissue has been a game changer for me and for the others I help. I’ve also been able to transform my life with proper nutrition, stress reduction, and a great support system. Every day is a challenge that I’m now strong enough to show up for.  

I’m sharing my story because there was a time I thought there was no possibility of feeling better. I was completely hopeless and hospitalized because of it. With proper support from family, friends, and mental health professionals, I was able to accept my illnesses and create a new path to wellness.

I became consistent with my own care, and I started practicing reformer Pilates three times a week, walking, and eating a mostly plant-based diet. I made movement part of a meditation process to reduce stress. I also found purpose and redesigned my life. I’m passionate about helping others find pain reduction through movement and now know that, while there is a lot that isn’t in our control, there also IS a lot we can do that’s within our control to feel and function better each day.