Zebra with medullary sponge kidneys

By Lena, Medullary sponge kidney, United States, February 22, 2021

Surrounding myself with flowers, family + friends

My name is Lena and I was born with two rare diseases - Medullary Sponge Kidneys and Ehlers Danlos Syndrome Type III. I am third generation EDS with my youngest son being fourth generation. This condition causes joint instability and chronic pain, along with a list of comorbidities, such as interstitial cystitis, vasculitis, chronic migraines, bicuspid aortic valve and more. Medullary Sponge Kidneys is a painful disorder that causes kidney pain and the production of kidney stones. I have had a dozen surgeries to remove stones. With these two genetic disorders, my life has been challenging. After putting myself through college and working full-time as an accounting manager for many years, my life finally came to a halt when I just couldn't sit for 8 hours a day any longer. At 35, when most people are in the prime of their career, mine was ripped from me. Adjusting was difficult and I was finally able to modify my life to fit the unpredictable nature of my disorders. I published children's books, opened up my own part-time accounting firm and became the Treasurer for our newly founded non-profit, NH Rare Disorders Association. I found a group of "zebras" and we made the unbelievable bond of friendship. These friendships saved my life and give me the purpose to fight for my health each day. I found the importance of community and the power of physical therapy, Pilates, nutrition that I use every single day. Being mentally and physically strong is the most important part of my daily care. I find mental strength is so many things, like having fresh flowers on my table, having a good self-help book to reference and a list of supportive family and friends. I may never have the life I originally dreamed of and each day may be inconsistent and inconvenient but I hold onto the little things that make a big impact each day for comfort, and practice gratitude for the things that I do have. Through all the bad that comes from being different and rare, there are just as many, if not more, good things - of you take the time to find and appreciate them. ❤️

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