Brooke H. Life with SPS | Guest Interview

Welcome to Ashley’s Anatomy, where we aim to share real stories highlighting the experiences of those living with chronic conditions. Every year on February 28th (or 29th in leap years), we recognize Rare Disease Day, a time to shine a light on diseases that are often overlooked. This day serves as a powerful reminder to educate, spread awareness, and support those living with rare diseases.

In the medical world, rare disease patients are often called “zebras.” The term comes from the saying that when doctors “hear hoofbeats,” they should expect a horse; something common, rather than a zebra. Zebras represent something rare, but the truth is, there are far more zebras out there than people realize. To celebrate Rare Disease Day this year I wanted to share the story of a close friend and fellow zebra, Brooke.

Meet Brooke Houck Heaton

Today, I’m honored to introduce Brooke Houck Heaton, who lives with Stiff Person Syndrome (SPS), a rare neurological disorder. Despite the challenges, both mental and physical, Brooke has turned her journey into a source of strength. She is 32 years old and resides in Oregon with her 2 kids and husband.

In this interview, Brooke opens up about her complex journey to diagnosis, the realities of living with SPS, and the lessons she’s learned along the way. Here’s Brooke’s story.

Diagnosis Journey to SPS

Brooke’s journey to diagnosis began at 16 when she was diagnosed with gastroparesis. Until then, she says she “was a very healthy person.” Around that time, she developed digestive issues and a “weird thing going on with [her] eye,” experiencing droopy eyelids, intermittent blurry vision, and “pretty intense neck and back pain” but never mentioned it to a doctor. She pushed through the discomfort, admitting, “You don’t know what’s normal or not normal at that point in your life when you’re that young.”

At 24, after giving birth to her first child, Brooke experienced a frightening episode when her legs locked up, making her feel like she was “stuck in cement” and forcing her to crawl to her newborn. Concerned, she sought medical attention, and doctors, suspecting a stroke, tested for Multiple Sclerosis and other autoimmune disorders, but her bloodwork provided no answers.

Her symptoms worsened over time, making stairs increasingly difficult. By 26, after her second child, she struggled with severe shoulder and neck pain, weight gain, and mobility issues. Despite seeing multiple specialists, no one could provide answers. One day, after leaving the gym, she couldn’t move her foot from the gas to the brake pedal due to a “really intense Charlie horse.” At home, she found herself unable to climb the stairs or speak, her “whole neck locking up and kind of in a thrown back position.” Her arms stiffened, and her feet twisted unnaturally. Experiencing “locking up everywhere” for the first time, she was rushed to the hospital. Doctors suspected Seronegative Myasthenia Gravis, but spinal taps were unsuccessful due to lower back spasms.

Referred to a neurology specialist, Brooke was placed on IVIG and Mestinon before testing her MG antibodies. However, IVIG delayed accurate testing, as it “can give false positives and false negatives.” A year after the MG diagnosis, her “pretty severe symptoms” still didn’t fully align. She experienced muscle spasms, rigidity, and heightened sensitivity to stimuli. After another ER visit, she insisted on being tested for five conditions, including Stiff Person Syndrome (SPS). With her PCP’s advocacy, she paused treatment for three months for accurate testing. “It was a really scary couple of months,” leaving her “basically bedbound the entire time and [unable to] eat.” When her results returned, they were “very positive and very high” for Stiff Person Syndrome-Plus, with an EMG confirming the diagnosis in 2024.

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What is SPS?

Brooke explains that “regular Stiff Person Syndrome is a progressive stiffness and rigidity of the muscles with sometimes abnormal postures and painful spasms.” However, she has SPS-Plus, which includes autonomic dysfunction and cranial nerve involvement. Autonomic dysfunction affects heart rate, blood pressure, and digestive processes, while cranial nerve involvement leads to facial weakness, speech difficulties, increased sensitivity to stimuli, droopy eyes, and pupil issues. She experiences “non-painful spasms, which are the jerking of [her] body, like twitches,” along with “stiffness and rigidity” and “rolling Charlie horses.”

Treatments Used for SPS

She currently takes “Baclofen 3 times a day” and has access to emergency doses “if it’s like a really bad episode.” This medication helps alleviate back rigidity, stiffness, and spasms. Brooke is also on an immunotherapy treatment called Rituximab, which follows a schedule of one loading dose, a second dose after two weeks, and then a repeat every six months. Since starting Rituximab, “the whipping Charlie horses of [her] back and neck and diaphragm” still occur but “are not daily and not nearly as often”.

In addition to Rituximab, Brooke receives intravenous immunoglobulin (IVIG) every other week. She also uses CBD as needed to help with discomfort.

Daily Challenges with SPS

One of the biggest challenges Brooke faces with SPS is its mental impact. She describes it as “such an isolating feeling having a diagnosis that makes you so homebound.” Mobility challenges are also a daily struggle, limiting her accessibility to various places. To assist with mobility, she uses an electric and push wheelchair and a walker with a seat.

Another major difficulty is the “loss of independence and normalcy for [her] family.” She recalls having to pull her kids from gymnastics and adjust to their new reality. Relationship changes add to the hardship. Brooke explains, “The things that my husband does for me, I didn’t think [he’d] be doing for me until we were in a nursing home.” Pain is another constant battle—she has dislocated her jaw and shoulders before, and the cramps are excruciating.

Ways To Stay Motivated

She keeps her spirits high through gratitude and prayer. Brooke uses a Joy Journal to record her small victories. “If [she] was able to take [her] own independent shower that day, [she] writes it down.” This journal serves as a reminder, especially during times when she’s “super symptomatic,” of all the things her body has been able to accomplish despite SPS.

Brooke emphasizes the importance of gratitude, explaining that it can shift your mindset: “When you start having gratitude for every small thing, like the ability to shower, brush your teeth, and go outside today” it makes a difference. She believes that while grieving losses is necessary, finding joy in what remains is just as important. “We have to grieve our losses… but we all have to have joy in everything we can do, or life is going to be miserable.”

Misconception About SPS

One misconception about SPS that Brooke wants to address is the legitimacy of the condition. She explains, “[She] thinks because of how [SPS] looks, a lot of people want to think it’s fake or dramatized.” The spasms and other symptoms that SPS patients experience may appear exaggerated or theatrical, but they are very real and completely out of their control.

How to Follow Brooke’s Journey

Brooke remains a source of strength and inspiration for others battling invisible illnesses. Her journey serves as a reminder that no matter how isolating the experience may feel, you are not alone. If you are interested in following Brooke’s journey with SPS, you can follow her TikTok account @Broken_Brookelyn