"Run" with me toward a cure

For most of my life, I knew something wasn’t quite right with my body. But for eighteen long years, doctors shrugged, tested, and guessed—yet no one had an answer.

It started subtly. A little stiffness in my legs, an odd heaviness when I walked. At first, I chalked it up to fatigue. I was a nurse practitioner, a mother, a caregiver—of course, I was tired. But over time, the stiffness turned into tripping. The fatigue became exhaustion. My legs felt like they were working against me rather than for me.

I sought answers. I saw neurologists, orthopedists, rheumatologists. Some told me it was stress. Others suggested multiple sclerosis, ALS, or a spinal cord issue. Tests came back inconclusive. Each dead end was frustrating, but I refused to give up.

As the years passed, the symptoms worsened. My gait became more spastic, my legs more uncooperative. I began using mobility aids. Still, no one could tell me why. The uncertainty was almost as difficult as the condition itself.

Finally, after nearly two decades of searching, a genetic test revealed the answer: hereditary spastic paraplegia (HSP).

HSP is a rare, progressive neurological disorder that affects the nerves controlling movement. It primarily causes spasticity (muscle stiffness) and weakness in the legs, making walking increasingly difficult. Some forms of HSP come with additional symptoms, such as bladder dysfunction, pain, or cognitive changes, but for many, it’s a slow deterioration of mobility. The condition is caused by genetic mutations, which means it can be passed down through families.

The diagnosis was both a relief and a challenge. I finally had a name for what I had been battling all these years, but I also knew there was no cure—only symptom management. Still, knowing meant I could adapt, advocate, and educate. It meant I wasn’t alone.

Eighteen years is a long time to wait for an answer, but now, I use my experience to help others on their own diagnostic journeys. HSP may be a part of my life, but it doesn’t define me. Instead, it fuels my mission to spread awareness, push for research, and support those who are still searching for answers of their own.