Speaking the Language of Rare – Part 2
In Part 1, I walked through some of the most common medical terms we’ve come to know and use daily. In Part 2, I want to continue unpacking those big words—especially the ones that pop up often in rare disease circles and our story.
🧠 Acute Cerebellitis Ataxia
A sudden inflammation of the cerebellum, the part of the brain responsible for coordination and balance.
In H’s case: This was one of the early misdiagnoses. The symptoms were similar, but the root cause was different.
🧬 Friedreich’s Ataxia
A rare, inherited disease that causes progressive damage to the nervous system, leading to movement problems and other complications.
This was one of the scariest possibilities, but was ruled out with genetic testing.
👀 Esotropia
A condition in which one or both eyes turn inward.
In OMS: Eye movement disorders are common. H’s eyes often moved erratically—called “ocular flutter”—which was a key symptom.
🚶♂️ Gait Walker
A medical device used to help with walking and balance.
H used one during his recovery when he was relearning how to walk.
🪑 Telathog
Supportive seating equipment used for kids with mobility challenges. Often used during therapy.
We were introduced to a variety of tools like these to help H remain safe and supported.
💉 Dexamethasone
A powerful steroid used to reduce inflammation.
We tried many forms of steroids during H’s treatment. Some helped, some made things worse (see: ‘roid rage).
💉 LP (Lumbar Puncture)
Also known as a spinal tap, this test involves inserting a needle into the lower back to collect cerebrospinal fluid for testing.
It’s uncomfortable and scary—and something no child should have to endure repeatedly. Yet here we are.
🔄 Chemo (Yes, again)
Because yes—it’s not just for cancer.
Chemo is often used in autoimmune disorders to suppress the immune system.
In OMS treatment protocols, this is often part of the plan.
“I will give you hidden treasures, riches stored in secret places…”
— Isaiah 45:3
💛 Heartbeat Moment
Learning this language has been part of our survival. But more than that—it’s been part of our strength. These aren’t just medical terms; they represent real battles fought by tiny warriors and the families who carry them.
If you’re new to this world, don’t be afraid of the big words.
Ask the questions.
Write things down.
Take it one day—and one definition—at a time.
You’re not alone.
💛 If you’re navigating life’s hard places and need a safe space to heal, grow, or just breathe—Circle of Hope Counseling Services is here for you.
We offer trauma-informed, faith-filled therapy for individuals, couples, and families.
📞 Reach out today to schedule your first session (KY residents only) or learn more: Circle of Hope Counseling Services.
You don’t have to walk this journey alone. Hope starts here.
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