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BENEFITING: Vasculitis Foundation

ORGANIZER: Julie

EVENT: 2015 Across the Bay 10k

EVENT DATE: Nov 08, 2015

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THE STORY:

Julie Mathers wrote -

This June, I was scheduled for my sixth set of chemotherapy infusions at Johns Hopkins. Hospital halls are like mazes, and when I arrived at my appointment, I said to the nurse, “It’s been a long journey!” That day, I thought about how much time I’ve spent in that hospital fighting for my life. I was diagnosed with Microscopic Polyangiitis over 20 years ago. If you saw me though, you’d never know I have a life threatening disease.

Microscopic Polyangiitis is an uncommon autoimmune disease that’s one of 15 types of Vasculitis. These diseases relate to your blood and inflammation where blood cells mistakenly attack any healthy organ in the body. Similar to cancer, they're an overarching umbrella of more than 80 types of extremely serious diseases, like MS, Lupus, and Rheumatoid Arthritis. In my case, this life-threatening disease attacks my joints, skin, kidney, and lungs. The problem is that patients aren’t always diagnosed early enough, treatments haven’t changed much over the years and require a lifetime on chemotherapy and high doses of medications with very serious side effects. 

While I’ve shared openly about my health with my closest friends and family, it’s my coworkers, new friends, and extended family who don’t hear about each organ failure (or flare) or any of my numerous hospital stays. I didn’t want to make people uncomfortable.

My physician Dr. David Hellman has been a constant for the past 20 years. I can’t be thankful enough to him and his team. He has saved my life after every relapse and provided hope for survival and a “normal” life during these difficult moments. His empathy, compassion, humor, and unwavering dedication to my health have been a positive force throughout.

With each flare and completed treatment, I learned to look to the future and started planning my recovery with exercise and alternative medicine — think running, yoga, different diets, acupuncture, chiropractics, massage, supplements, medication, and my personal favorite, a swim with dolphins with friends. In between, there were plenty of tears as I dealt with the consequences and side effects of the different drugs and treatments that saved my life on multiple occasions.

On that June day, I realized that I needed to talk about my journey and this awful disease. My survival story, courage, and optimism can provide hope for others. For the first time, I started to connect with other survivors. That’s where I met Savannah.

She and I were both impacted at the same age, but unfortunately, Savannah did not receive an effective treatment in time to save her kidneys. She’s working towards achieving complete remission while being treated at Stanford’s medical center and waiting to receive a kidney transplant.

Savannah’s a smart, beautiful, optimistic young girl. She’s starting college this fall in California. At the same time, she’s active on the kidney transplant donor registry. Our experiences are very similar, but she smiled and laughed as she told her story while I was overwhelmed with emotion — sad that she was not diagnosed soon enough to save her kidney's and not given the only FDA approved treatement for this disease. 

Unfortunately, Savannah's story is not unique with these diseases. Too often, this is happening. I want to give Savannah and those newly diagnosed hope for their future. I want to provide promise and strength for survival. I want their journey to be dramatically different than mine.

Today, I run races because I can. When I run, I think about the beautiful life I have built for my daughters Sofia and Sadie and me. I hope that using my body will help heal it. That promise is what keeps me going.

I had already planned to run a race this November to show this disease that I am winning, but this time, I also want to raise money for the Vasculitis Foundation in honor of Savannah and the many other people whose lives have been affected. I want to raise awareness for the very disease that I have suffered from my entire life. We need to continue to move forward towards a cure.

Let’s begin to elevate the conversation about autoimmune disease so that we can improve the quality of life for the 23 million Americans who are suffering. We can beat these diseases, but we have to start somewhere.

Please take a moment to watch our videos and listen to our stories. Share this in your social media feeds. Any contribution makes a difference. We need targeted research for better diagnosis and medications to reduce the lifelong suffering that comes with these diseases.

Learn more about vasculitis

Learn more about kidney donation

 

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