Has anyone had any experience with incontinentia pigmenti?

Question

Hey all,
    My wife and I have just be told that our beautiful newborn daughter has been diagnosed with the rare disease known as incontinentia pigmenti. I was curious if anybody has had any first hand experience with this rare disease. My wife has fallen into a Google search "k hole" and I'm hoping some real life stories may help us grasp the severity a bit better.
Thanks!

Answer

How they actually confirmed is IP? Is there an specific test?

Answer

My June baby has IP! She has a good deal of lesions on her arms and legs. She’s almost completely past the first two stages of blisters and plaquing. She’s developed some of her “tiger stripes” (as we call it 🤗) aka hyperpigmentation. Her eyes are good, her brain MRIs look good, no teeth yet at 7 months so we are still waiting on that. She maybe has a couple of spots of alopecia as her hair has started coming in. She’s been so badass and joy filled during all of her ointment applications, bandaging, and exams. I’m happy to chat! Not going to lie, I got excited to hear that there’s another family on here managing IP!

Answer

Hello! My sister and a cousin both have it!! My cousin has one symptom of it (mild alopecia), but my sister (who is now 20) has a few splotches of different color on her skin (mostly on her stomach and back, they look like birthmark but we were told they were from IP), and she has some teeth that only had baby teeth with no adult teeth under them (So now at 20 she still has 2 or 3 baby teeth that as long as she takes care of them they will stay forever). She also had seizures as a baby, but hasn't had any since she was less than a year old.

Has anyone had any experience with incontinentia pigmenti?

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