Langerhans cell histiocytosis

Today, I get to introduce you to another Katie.

She is mom to Lola, who has LCH, Langeren Cell Histiocytosis.

Katie was searching when her daughter was nine months old for other families who had LCH and could barely find anything.

She was trying to find it through hashtags.

And so she started sharing online.

Once she started sharing on social media, she started connecting with families all around the world who have kids with LCH.

And that's exactly why she's on this podcast today.

She wants you to know that the way you feel in those first few weeks are not the way that you're going to feel the entire time that you're navigating this diagnosis.

Certainly.

So our baby son Jude, he gorgeous little baby happy baby at 10 months old he had these terrible um flakes on his scalp and everyone was saying oh that's cradle cap use baby oil uh so he would have this horrible baby oil and all these flakes and i'd go around apologizing for how he looked um and then he stopped gaining weight at 10 months and so i took him to see the dermatologist american um dermatologist on the island, Dr. Daly, and she said, I don't want to alarm you, but there's this very rare blood disease called Langerhans cell histiocytosis, and she pulled out a big textbook and showed me god-awful pictures of, yeah, children's scalps, because it can attack the skin,

and

she said, I'm going to do a biopsy, and I almost threw up.

like he was so protective.

Unfortunately for Duane's wife, she'd been living with the debilitating disease, Langerhans cell hysterocytosis, or LCH.

We all have Langerhans cells, and they play a vital role in our immune system.

In those who have this rare disorder, they accumulate abnormal Langerhans-type cells in their tissues and organs that could potentially cause significant damage.

Holy sh**.

A double lung transplant? That's a major transplant.

As you can probably surmise, pulmonary LCH is a highly disabling condition that greatly impacts the lives of those who have it.

Dwayne's wife reported that she was on oxygen for 10 years and had been on the transplant list for five.

AVPD is mostly acquired.

Causes include pituitary surgery, tumors such as craniopharyngioma or germinoma, trauma, hemorrhage, infarction, infiltrative disease such as neurosarcoidosis or Langerhans cell histiocytosis, the hypophysitides, including IgG4-related infections and idiopathic disease.

Congenital AVP gene mutations are much less common.

AVPR is the reverse.