Describe your life at your healthiest point.
Being able to go out for a short (very short) walk without my cane as well as playing with my 3 dogs!
How many years before your diagnosis were you experiencing Stiff Person Syndrome (SPS) symptoms?
Ten to fifteen years. I’m 24 years old today.
Describe your most debilitating symptoms.
The Stiffness. It comes on so strong and so sudden you never see it coming until it’s already there. My body will tighten up like it’s about to have one giant Charlie horse. Sometimes I do and sometimes that feeling just stays. I never know. My legs will buckle under me, my hands will shake violently (texting and typing has become very difficult). My arms are locked and movement is unattainable until my body decides it’s over.
Describe treatments you have tried, what has worked and what has not.
1. Baclofen: worked wonders for the muscle spasms.
2. Valium: in use with the baclofen the two really help slow down my spasms. Some days I don’t have any or notice any.
3. Keppra: no help, just made me extremely drowsy.
4. IVIG: helped with the muscle rigidity for the past seven months but has suddenly decreased in its effectiveness.
Describe a time you received compassionate care.
Medical University of South Carolina (MUSC) has some of the most compassionate students and doctors caring for you. Along with my neurologist and my other providers I never felt ignored or like it was all in my head. Greatest care I’ve
Describe how SPS has changed you.
I’m angry. I was diagnosed just about a year ago (2021) and it uprooted my whole life. I can no longer teach, go for hikes, and enjoy quality time with my new husband. However, I also think I’m able to be introspective about more. I can help others with this disease, I can learn as much as I can, and share it with people. It’s a double-edged sword for sure, but overall I try to seek how I can help others through my pain.
What brings you joy?
My husband and my dogs. My husband is the most compassionate man and cares for me at every stop making sure my needs are met. My three dogs are a huge joy but I can’t run around with them like I used to. I have to sit and throw a toy and play fetch rather than being able to play with them myself.
What do you want people to know about you?
As a former teacher, leaving the profession was not what I saw myself doing only two years into it. I like to keep busy, and while the stress of teaching is overwhelming, the students I see everyday are worth it. I just wish I could go back.
To my husband, who selflessly serves in the Marine Corps, I don’t know how you put up with all this but you do it with kindness and a joke ready whenever I need it. For that, I can never repay you. I love you endlessly.
To my family, you have had my back since day one all the way back in 2003 with my first chronic diagnosis and nothing has changed. From flying from NJ to SC just to visit me in the hospital is exactly what I needed, even though I don’t express it enough. I love you unconditionally and hope you know that, always.
Occupation/previous occupation, if disabled.
Sales associate. (Formerly, a teacher).
Misdiagnosed? With what.
Yes. Pinched nerve and herniated disc.
What do you want The SPSRF to achieve?
If not a cure, help find symptom relief that can help this nasty, nasty syndrome.