u/Still_Pair_2121

Tl;dr: Is this tension irritation, and will it lead to scarring? Does this mean cornrows are out of the question as a protective style for me?

Background:

After getting diagnosed with CCCA last December, I took a break from getting braids with extensions. I’ve mostly blow dried my hair, put it in chunky braids and thrown on a curly half wig while using clobetasol and steroid injections to control the inflammation.

At the end of September, my derm said my inflammation was under control and I can look into minoxidil for growth.

I figured getting cornrows would make application of the foam easier. So I went to a hairstylist (who specializes in working with alopecia clients) for a wash, trim and braid down last Friday. It’s my first time getting cornrows. I felt a bit of tension, but thought it would go away after a day or so.

The issue:
However, this past Wednesday I took a look at one of the tension spots and noticed it was red and inflamed in the corner(first pic). So I ended up taking down the horizontal braid down to ease the tension. Also undid the base of the vertical braids because I felt pulling there.

The second picture is what it looks like right now, after a few days with the tight braids undone.

My questions/concerns:
The irritation has gone down, but will this lead to scarring?!? Does this mean cornrows are a no-go for me.

Hi everyone. I’m (33F) new here and honestly just looking for a space to vent and get some advice from people who are going through something similar.

The backstory

I’ve always had thin fine hair, but I had no idea how significant my thinning had gotten till a routine haircut last November. My stylist alluded to a widening at my center part, and took some pictures to show me. I was genuinely shocked at what I saw.

I went to a dermatologist, got a scalp biopsy, and was diagnosed with CCCA.

This diagnosis was truly devastating to hear that some follicles are already scarred over, meaning that hair loss was permanent.

Where I’m at now

My doctors prescribed clobetasol and ketoconazole shampoo, plus iron & vitamin D supplements (I’m also severely iron and vitamin D deficient). I’ve been trying to stay consistent, but this year has been brutal; I lost someone close to me, and that’s thrown everything off. Consistency with anything feels hard right now :/

To make matters worse,the pictures I took at my hair appointment last month made it look like things are getting worse, not better, and that’s broken my heart all over again.

What I’m considering doing next

• Switching to steroid injections (hoping monthly in-office will be easier than remembering daily clobetasol). Switching to iron infusion as well for the same reasons

• Starting low dose Oral minoxidil and possibly metformin ( research shows it can help with the scalp inflammation )

There are options, I know. But it’s a lot to manage all these protocol steps. And the idea of managing this for the rest of my life just feels like a lot right now.

For anyone who’s been on this journey longer, what helped you most, emotionally or practically, in the early days?

Any words of encouragement are so welcome 🙏🏾

Edited to include my age!

Any idea the brand/designer of these stunning boots? 🤩