What it’s like to live with stiff person syndrome

Jane Lees, 58, lives in Indianapolis and used to work in media. Last year, she suddenly lost a lot of weight and began experiencing extreme muscle pain. She learned a rare condition was behind it. She told her story to TODAY to encourage others to advocate for their health.

Everyone likes to think of themselves as 1 in a million and last year I learned I truly am. After a series of symptoms that ranged from mild to worrisome, I learned that I have stiff person syndrome, a neurological condition that affects 1 in a million people, mostly women. Having a unique condition has been tough, but I have spent the time trying to understand who I am now that I live with this rare illness.

I love to cook, but now I need to sit down every few minutes to build up my strength to continue. (Courtesy Jane Lees)
I love to cook, but now I need to sit down every few minutes to build up my strength to continue. (Courtesy Jane Lees)

I first noticed something wrong when I joined my daughters for vacation last year in Florida. I struggled to keep up with them. But the real wake-up call came when I visited my college roommate and she was shocked by my appearance — I weighed about 87 pounds after suddenly dropping 20 pounds in a month without explanation.

Then in early May, I woke one morning and realized I could no longer ignore what was happening. I felt like I had the flu, but I had received a flu vaccination. Did I somehow get the flu from the vaccine? Doctors felt somewhat puzzled by my condition, but found that I had an infection and treated me for it.

For months, doctors didn't know what was causing my extreme muscle pain, fatigue and stomach upset. Finally a med student suggested stiff person syndrome. (Courtesy Jane Lees)
For months, doctors didn’t know what was causing my extreme muscle pain, fatigue and stomach upset. Finally a med student suggested stiff person syndrome. (Courtesy Jane Lees)

I never completely recovered. The left side of my body felt so tight that I’d ask my daughters to help stretch it. I struggled to walk and I felt unsteady on my feet. My body was so stiff and weak that I felt like I did not have the strength for basic tasks. I was in constant pain. By September I returned to the hospital and was diagnosed with Type 1 diabetes. I felt relief and imagined feeling better soon, but it never happened. I still had crippling pain, stiffness and weakness.

The team at Indiana University Health ran every test they could think of trying to uncover the reason why my muscles felt so tight, but still felt at a loss about what was behind my pain.

Then a med student mentioned something that the doctors and nurses had never heard of — stiff person syndrome.

Because stiff person syndrome compromises my immunity, I can't see many people these days. Though I still appreciate time with my family. (Courtesy Jane Lees)
Because stiff person syndrome compromises my immunity, I can’t see many people these days. Though I still appreciate time with my family. (Courtesy Jane Lees)

At first I felt overjoyed there was a name for what I was experiencing. But that turned to worry when doctors admitted that they don’t really understand how to treat this

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