Hope & Healing: Overcoming a CCM

Let's champion the cause of those battling cavernous malformation and work towards finding a cure. Every contribution to the Alliance to Cure Cavernous Malformation will make a significant impact on the lives of individuals, like me, who have been profoundly affected by this rare disease.

I’m Kaitlyn Nelson, and I'm on a mission to make a difference. At just 30 years old, I was thrown into a whirlwind of uncertainty when I received the diagnosis of spinal cord intramedullary cavernoma (SCIC) in February 2023. This revelation followed years of misdiagnoses and ineffective treatments, casting a shadow over every aspect of my once-vibrant life.

Unlike cavernomas in the brain, which often present with different symptoms, spinal cord cavernomas like mine can lead to unique challenges. My symptoms, ranging from neuropathy and muscle stiffness to balance issues, incontinence, and sensory deficits, have transformed even the simplest tasks into daunting challenges.

Every day begins with the piercing reminder of pain coursing through my body. Each morning, as I gingerly dress, the simple act of donning a shirt or bra sends shockwaves of agony rippling through my torso. It's as if an unseen force is relentlessly pulling at my skin, leaving me feeling debilitated from the moment I wake.

My torso and back are gripped by an unyielding tightness, as though I'm trapped in a vice. To find even a fleeting sense of relief, I rely on a ten's unit, a constant companion in my quest for normalcy amidst the chaos of chronic pain. Yet, even with its gentle electromagnetic pulses, the sensation of itching persists—a relentless, maddening itch that dances across my abdomen, torso, ribs, and back, transforming every scratch into a searing blaze of agony.

My right leg now feels heavy and unyielding, as if weighed down by invisible chains. Controlling its movements has become an arduous task. The loss of sensation in my skin adds another layer of complexity to my daily struggle, rendering me unable to feel pain, touch, temperatures or even the gentle caress of a breeze.

Exhaustion has become my constant companion, weighing me down in a body that feels more like a prison than a vessel for living. I yearn for a cure—a beacon of hope that promises liberation from the shackles of my condition.

My heart aches with the longing to feel normal in my body again—to experience the subtle nuances of sensation that I once cherished. It's a prayer whispered in the quiet moments, a fervent hope that one day, I will regain what was lost. With each passing day, I pray for a future where I can reclaim the vitality and vibrancy stolen from me by cavernous malformation. I dream of a tomorrow where I can simply be a normal 30-year-old, where time no longer slips through my fingers. But until that day dawns, I cling to hope and to the unwavering belief that together, we can make a difference. Join me in the fight for a pain-free tomorrow.