In Speaking the Language of Rare – Part 1, when you live with a rare diagnosis, medical terms start to feel like household words. In our world, terms like IVIG, ACTH, and Plasmapheresis are as common as “shower” or “cheese” or “cat.” Even the littlest kids around here know what they mean.
But I still remember when I first heard these words.
I felt like I’d landed in a foreign country with no idea how to speak the language.
So today, I’m slowing down and translating some of the words you’ve seen throughout our story—for the mamas who are just now hearing them for the first time, and for the friends and family who want to understand.
🩸 IVIG (Intravenous Immunoglobulin)
A blood product made from donated plasma. It’s infused into the body to boost the immune system or help calm an overactive one.
In our case: Monthly IVIG is to regulate H’s immune system and try to decrease the inflammation in his brain.
💉 ACTH (Adrenocorticotropic Hormone)
This is a hormone that helps your body respond to stress and inflammation. When given as a shot, it acts like a powerful steroid.
For us: ACTH came in the form of daily injections and brought some of the hardest side effects—rage, insomnia, and OCD symptoms.
🩺 Plasmapheresis (PLEX)
This is like a “blood wash.” The blood is removed, the plasma is separated out, and then new plasma or a substitute is put back in. It’s used to remove harmful antibodies.
Why it mattered: It was one of the most intense parts of H’s treatment and helped remove autoimmune activity from his system.
💊 Chemotherapy
Often associated with cancer, but also used to suppress the immune system in autoimmune disorders.
In our case: H received a chemo drug (Rituximab) to help stop the immune system from attacking his brain.
🧲 MRI (Magnetic Resonance Imaging)
A non-invasive imaging tool that uses magnets to take detailed pictures of the inside of the body, especially the brain and spine.
We’ve had: More MRIs than I can count. It’s one of the first tools used when trying to figure out what’s going on neurologically.
🔬 MiBG Scan (Metaiodobenzylguanidine Scan)
A special type of scan used to look for neuroblastoma, a cancer often associated with OMS. It involves a radioactive dye and a scanner to detect tumors.
For H: Every time they mentioned this scan, my heart would sink. Thankfully, it was always clear.
🧠 Neuroblastoma
A rare cancer that often begins in the adrenal glands but can spread anywhere in the body. It is commonly linked to OMS.
H does not have this, but it was a huge fear in the beginning.
❓ Idiopathic
This simply means “we don’t know why it happened.”
For us: H’s OMS is idiopathic—no known trigger, no cancer, no infection. Just… one day, it showed up.
⚖️ Ataxia
A neurological sign consisting of lack of muscle control or coordination of voluntary movements, such as walking.
H’s walking was one of the first signs that something was wrong.
🧬 Ataxia Telangiectasia Like Disorder 1 (ATLD1)
A rare genetic condition involving movement issues, immune deficiency, and sometimes increased cancer risk.
At one point, this was suggested as a possible diagnosis for H. It was later ruled out.
“Therefore, encourage one another and build each other up…”
— 1 Thessalonians 5:11
💛 Heartbeat Moment
These words may sound big and scary. They once felt that way to me, too. But now, they’re part of the rhythm of our lives. My hope in sharing them is simple: to bring understanding, compassion, and a little bit of light to others walking this same unfamiliar road.
Part 2 coming soon, where we’ll break down more terms we’ve faced along the way.
💛 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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