Anyone know of support groups for kids with alopecia?

[Whatsernames]

8 yo dd has been diagnosed with alopecia, we've been kind of burying our heads in the sand and hoping it would get better but it's gotten to the stage now where it's almost impossible to hide and isn't improving 😥

We've had all tests etc done and are getting the appropriate medical treatment so I don't need advice in that way, but what I do need is advice on hairbands, covers, how to style a wig and make sure it stays put, things like that.

We're lucky enough to have been given a wig by the amazing LPT but it's very bushy and DD doesn't like it. I'm also really worried about upcoming swimming lessons at school, and how she will manage in the changing rooms, things like that.

The lady who fit our wig said there's a very good online forum or support group (can't remember which) but I forgot to get the name of it from her.

Anyone? 🙂

I don't know of any support groups but my own has grown back since I started using this shampoo:

www.hollandandbarrett.com/shop/product/dr-organic-tea-tree-shampoo-60083623

My sister was in this exact situation at 9 and her hair has never come back. The one thing that made a huge difference was having a weave system put in - much less obvious and uncomfortable than a wig. Lucinda Ellery led the way with this but a specialist in Afro hair maybe be able to help too. Sending your little girl lots of love. It’s incredibly tough.

I don’t know whether you will get a notification for this but I wondered how your DD was doing, and also how it all started for her. My DD is 4.5 and over the past few days I’ve noticed small bald patches on her scalp. I am going to make an appointment to see the GP, but of course I am getting into a bit of a worry and looking up too much online….

My dd has Alopecia Totalis, the Facebook page Parents of Children with Alopecia is a massive help in so many ways.

hi how is your daughter now, currently going through this with my 5 year old x

Any updates from anyone please?

My niece is 10 and has found the support groups at Alopecia UK very helpful www.alopecia.org.uk/

Any updates please? 8 year old has lost her eyebrows

Hi all 👋 Just popping back here as I saw some recent posts on the thread.

I found a fantastic local group in the end, I’m not uk based so not much point in me sharing the group, but I found them by searching on Facebook for ‘alopecia kids’.

We have in person meets several times a year, and it’s been a game changer for my little one to meet other kids with alopecia.

My kid still suffers unfortunately, despite constant cream application and regular consultants appointments etc, but it peaks and troughs.

When I made the post originally she had lost around 40% from her head, it all grew back in over a 12 month period, and then after about 6 months, started to come out again. She only has one patch now though on the underneath and it’s manageable.

Most importantly, she, and the rest of the family, have just accepted it and just treat it as a mild annoyance now. It drove me batshit at the start, especially when people would notice in public.

I’d recommend checking out Abby Wren on instagram, she’s a US makeup artist with alopecia who does lots of work with women and kids with alopecia.

Happy to answer any other questions as I know it’s a bewildering and stressful time.