Our Founder's Story

Some of this may be hard to read. It was certainly hard for me to write. But it is my story and hopefully sharing it will help people in some way. I have learned that everyone goes through difficult times and how you respond to them is key.

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Life drastically changed for me in 2014. I was a dentist. I traveled with my kids. I was training for my fourth-degree black belt. I never gave my health a second thought. And one day it all changed when my former husband, Dave, tragically passed away. My kids were eleven and thirteen at the time. I was working, dealing with attorneys, and managing multiple properties. But the biggest concern for me was my kids. They had just lost their Dad. Were they going to be okay? They were just kids. My stress level was through the roof. I felt so much pressure to be alive. This was the beginning.

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I was worried that this heightened stress could damage my body. It became crystal clear that my health was my number one priority. So, I changed primary care doctors from someone I didn’t know well to a VIP doctor I had seen in the past. There was a sense of urgency for me to do this. I thought paying for concierge medicine equated to better doctors and better care. I was wrong. I got pneumonia three months after Dave died and things spiraled downhill from there. During the next two years I experienced a myriad of symptoms including shortness of breath, fatigue, and excruciating neck and back pain. It was so bad I rushed to the ER several times only to leave with no answers other than “You don’t have anything life-threatening. Follow up with your primary care doctor.” I consulted numerous specialists. My primary care doctor told me it was just stress, prescribed anti-anxiety medicine, and recommended a follow up visit a few months out. I will never forget his words. He leaned into my face and said, “I don’t know why you keep going from doctor to doctor. This is stress.” My response was, “If you felt the way I feel, you’d be doing the same thing. I know I am stressed, but I am also sick. And I need help.” I was outraged. I changed doctors again. This would be the first of many discouraging, useless medical encounters.

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My health continued to unravel. I started experiencing a rapid heart rate, insomnia, and difficulty eating. I lost 30 pounds in a month. I felt so sick I could barely get off of the couch. It was awful and relentless. I had to stop working. I couldn’t drive. I was concerned that I was going to die. My in-laws visited to help. When they left, I had to hire someone to help me get through the days and drive my daughter to soccer practice. I hated my kids seeing me like that. They had been through so much grieving their father. Now they were watching their once-capable mom, fading – sickly thin, relegated to the couch wrapped in heating pads.

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I was desperate to find answers. A diagnosis, whatever it was, would be better than these mystery afflictions. As the symptoms emerged, a friend described her nervous system disorder and a light bulb went off in my head. I thought, “THAT is what I have.” And sure enough a doctor diagnosed me with the nervous system disorder my friend had – dysautonomia. Finally an answer. And better still, he predicted I would recover within two years. I felt hope. Finally, a light at the end of the tunnel. Or, so I thought.

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But months later, new symptoms appeared. The left side of my face became numb, my hips felt weak, and then even walking became difficult. My primary care doctor sent me to a top local neurologist. He listened to my story, ran a battery of tests, and promised to call soon with the results. The anticipation was killing me.

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It was a Monday night when I received his call. He said, “All of your tests came back normal except for one, your GAD antibody test. That means you have Stiff Person Syndrome.” I immediately began searching the internet. My head was spinning. What was Stiff Person Syndrome? Was there a cure? Have patients gone into remission? Who are the best doctors to see for this?

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I learned Stiff Person Syndrome (SPS) is a neurological disorder with features of an autoimmune disease. Symptoms include debilitating pain and muscle spasms. Currently there is no cure. I found no indication that any patient had ever achieved full remission. Now I am living with this thing. It wasn’t over then, and it still isn’t over. Despite consulting the top SPS doctors in the country, trying many different medications, powering through pain-rehab, participating in low impact exercise, and working with a nutritionist, I am still struggling. Every day I am educating myself and doing what I can to get better. I am taking a course on autoimmune disease and experimenting with holistic methods of healing. My goal is two-fold: to find a way to remission and to teach my kids how to handle adversity.

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The problem is there aren’t great treatments for SPS. There are medications that help dampen the symptoms but they, like all meds, have undesirable side effects. There are immunotherapies available, but they have serious risks and don’t work well for everyone. We need research to gain a better understanding of this syndrome, its causes and remedies. The main purpose for me in establishing this foundation is to raise money for this necessary research.

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Research money is slow in coming because SPS is considered rare. Estimates indicate only one-in-a-million people have SPS in the U.S. But the true numbers are likely higher – SPS mimics other diseases, like Multiple Sclerosis (MS), psychosomatic illness and other autoimmune diseases. On average it takes a staggering seven years to determine a patient has SPS oftentimes after they are fully disabled.

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I am on a mission to change that.