“My name is Tara Zier and I was diagnosed with a rare disease called Stiff Person Syndrome in 2017. SPS is a progressive neurological condition with autoimmune features. People have muscle spasms so severe they break bones and dislocate joints.
My symptoms started after I lost my former husband to suicide in 2014. The stress was unimaginable and the trigger for my disease. I went from being a dentist, doing karate, and traveling to not being able to work, drive, or care for myself or my kids.
In 2017, my neurologist was denied an NIH research grant because there was not enough research! It was the moment I decided to start a foundation to raise awareness and funds for better treatments and a cure.
Today, The Stiff Person Syndrome Research Foundation (The SPSRF) has a dedicated team working toward our mission. We connect with SPS patients worldwide, earn news coverage globally, and network with other rare disease organizations thanks to a Chan Zuckerberg Initiative grant.
Through this process, I want to help other warriors navigate through their rare disease. This is part of my toolkit:
1. Be your own advocate. It took me 3 years, 9 ER visits and 13 specialists to finally get a correct diagnosis. It takes on average 7 years to get diagnosed with SPS. I got diagnosed in 3, not because I was lucky, but because I was on a mission.
2. Educate yourself. Learn about the disease, the best doctors to treat it, and all treatment options. Be an active participant in your care.
3. Find a superstar primary care doctor. This person is your quarterback for your health care who can refer you to the right people and expedite the process.
4. Connect with people. People with rare diseases often feel isolated. The Rare Patient Voice is a great example of how patients can connect and the support is tremendous.
5. Find your purpose. I had to shift my mindset from what I can’t do to what I can do. Creating The SPSRF has been extremely rewarding and I feel more fulfilled now than ever. @stiff_person_syndrome”