By Lena Z.<\/p>\n
I was born with two rare diseases: <\/span>medullary sponge kidneys (MSK)<\/span><\/a>,\u00a0a birth defect where changes occur in the tiny tubes inside a fetus’ kidneys, and <\/span>hypermobile Ehlers-Danlos syndrome (hEDS)<\/span><\/a>, a progressive connective tissue disorder. Since both diseases are genetic, my journey started when I was born. However, I didn\u2019t experience my first symptoms until I was a teenager.<\/span>\u00a0<\/span><\/p>\n When I turned 18, I got my first kidney stone, which had to be surgically removed.<\/span><\/b> I\u2019ve 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. <\/span>\u00a0<\/span><\/p>\n The same year as my hEDS diagnosis, <\/span>I found a support group and joined forces with a few others with EDS to open NH Rare Disorders Association<\/span><\/b>, 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.<\/span><\/p>\n 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\u2019ve also been able to transform my life with proper nutrition, stress reduction, and a great support system. <\/span>Every day is a challenge that I\u2019m now strong enough to show up for.<\/span><\/b> \u00a0<\/span><\/p>\n I\u2019m 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.<\/span><\/p>\n I became consistent with my own care, and I started practicing reformer Pilates three\u00a0times a week, walking, and eating a mostly plant-based diet. <\/span>I made movement part of a meditation process to reduce stress. I also found purpose and redesigned my life<\/span><\/b>. I\u2019m passionate about helping others find pain reduction through movement and now know that, while there is a lot that isn\u2019t in our control, there also IS a lot we can do that\u2019s within our control to feel and function better each day.<\/span>\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":" By Lena Z. I was born with two rare diseases: medullary sponge kidneys (MSK),\u00a0a birth defect where changes occur in the tiny tubes inside a fetus’ kidneys, and hypermobile Ehlers-Danlos … <\/p>\n