Shaina is the former director of state advocacy and alliance development for a national nonprofit organization. She dedicated years of her life advocating for children and adults living with conditions that cause chronic pain. Her career was a personal one, as Shaina is a part of the pain community.
Born with a genetic connective tissue disorder called Ehlers-Danlos Syndrome (EDS), Shaina wasn't diagnosed until the age of 30. Her symptoms were more consistent and intense following the birth of her son, who would also be diagnosed with EDS years later.
Like many who live with an invisible illness, Shaina underwent years seeking answers, taking unsuccessful medications and meeting with various doctors before her invisible condition was validated by a geneticist.

While juggling motherhood, a career, and serving her town as an elected official, Shaina's husband, Tim, had to take on the role of her caregiver, driving her twice to the emergency room for unexplained tachycardia issues. These same issues landed Shaina an ambulance ride to a hospital while traveling across the country for work. Unable to travel back on an airplane alone, a co-worker and friend accompanied Shaina back to the east coast. The plane landed in New Jersey, hours away from her home. Tim drove from Connecticut to New Jersey to pick her up, then brought her to their local hospital less than 24 hours later; Shaina spent three days and two nights in the hospital for medical testing and monitoring.
Doctors identified the symptoms as a form of dysautonomia, a disorder that disrupts the autonomic nervous system, and one of the many comorbidities of EDS.

When her diagnosed and undiagnosed neurodivergent conditions, combined with her invisible illnesses, became incredibly difficult to manage, Shaina heeded the advice of her health care provider and filed for temporary disability insurance. It was during this medically necessary time away from her full-time position that the world was facing the coronavirus pandemic. This led to an extension to her temporary disability insurance and eventually stepping away from her position altogether.

Not having a career, experiencing the loss of a foster to adopt child, in addition to emotional therapy sessions and a neuropsychological evaluation left Shaina feeling hopeless. She found comfort in drawing, continuing to care for her rescue animals, writing, creating a safe space for other unique zebras (Tiny Zebra Notes on Instagram), and civic engagement. She recently took on a more proactive role for one of their family business ventures, live streaming twice per week with her son, Landon.
Shaina continues trying to navigate the choppy waters that often comes from being diagnosed as a neurodiverse individual, but she's optimistic that she can continue learning about herself, her conditions and learning to like who she is.

Her son, Landon, experienced his own set of chronic pain issues, ranging from extended bouts of stomach aches to neck pain, headaches, migraines and leg fatigue. He went to physical therapy in elementary school, had allergy testing, completed an elimination diet to reduce pain levels, paid visits to a motility specialist, cardiologist, and orthopedist, all in an attempt to find answers and manage symptoms.

In 2021, Landon didn't return to public school. The family jointly decided it may be safer and more ideal for Landon to experience a more flexible learning environment, one that could better accommodate his symptoms than his previous 504 plan could in a school setting. In addition to a supportive schedule to best meet his physical and mental needs, Landon's family travels to further expand his knowledge and experiences.

As Landon continued to physically grow, so did his pain intensity. Riddled with constant neck pain, new lower back pain and continuous leg fatigue, the family agreed that it should be further investigated and not simply attributed to EDS. An MRI of the thoracic, lumbar and cervical spine was reviewed by a world-renowned neurosurgeon who confirmed that Landon had tethered cord syndrome. He underwent surgery in August of last year (2023) to prevent future, irreversible issues while alleviating existing symptoms. Landon was in the hospital for three days, followed by physical therapy appointments. This was an exhausting time for both Shaina and Landon, as the EDS symptoms never go away.

Fortunately, the tightness in Landon's neck has gotten better since the tissue that attached itself to his spinal cord was removed. He still has neck pain due to subluxations (mini dislocations those with EDS can experience in all parts of their body), but the family feels the surgery was both proactive and successful. The changes and experience inspired Shaina to craft a tethered cord release surgery FAQ Sheet for patients, a resource that was embraced by the neurosurgeon and will be distributed by the hospital.

As a chronic pain family, flexibility (no pun intended), patience and compassion are essential. Energy levels may determine weekend plans or day time activities. Shaina's husband has to, on occasion, take on the role of a caregiver, and Shaina is Landon's health care advocate and caregiver. Each day is different because pain and energy levels can vary, but the family is committed to being more communicative so everyone is on the same page about what everyone is mentally and physically experiencing.