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My mom is living with lupus. I joined this site to try to help her find some tricks to help her cope. She knows no one else living with this. My mom is 41 and has had this since her late 20's. She has issues with her scalp peeling and of course hair loss. She has a few greys and she thinks its the end of the world. She tries to color her hair but it sends her into a flair. When I say flair I mean she has a rash all over her head and if any of the color touches her ear they break out and even ooze as yucky as that sounds. Im wondering if anyone has any suggestions to treat the dry scalp and any on coloring her hair. Shes going to do it no matter what it does to her as long as it looks good. Thanks for the input
 

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Hello there and welcome :)

I think of all the things that helps people most is knowing that so many others are out there going through the same things and that they understand.

I live in an area where there are absolutely no support groups and little or no information. Thankfully this site has been a wonderful place to come where I have made many friends and recieved the most unbelievable support. Maybe you could encourage your Mum to take a look, read through the boards and maybe join us?

As for her hair...I have very little experience of lupus lesions, especially on the scalp. I'm just wondering if she has tried any of the very "natural" dyes such as Henna. It is messy but very gentle (and it does come in other colours than bright red!). Obviously, even with natural hair colour, she should do the 48 hour test to see if she reacts or not.

I'm sure she has already asked her dermatologist for advice. That's probably the best thing to do. Unfortunately not many docs realise just how important things like hair and skin are to people who suffer from a disease like this. Another person to ask is also a good hairdresser (she has to insisit that no, normal hairdye will not do it) as often with a good cut a lot of bald patches can be well disguised.

You could also do a search here under the search button with words like "hair dye" "reaction to hair dye" "hair loss"... as there have been many threads on similar topics.

It is so important to feel you look good as it genuinely does make you feel a whole lot better.

hugs to your Mum :hug:
Katharine
 

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The Other Illinois Tammy
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kennedy,
I am glad that you are trying to help your mom. There are natural hair colors and temp ones that may help her with her hair. I know how she feels because she is my age. As for the scalp try the baby lotions and part the hair rub onto the scalp, I only say the baby lotions because they are so easy on the body. it may or may not work with lupus all you can do is trial and error. You could also speak with a demy and see if they could give her something that may help.
best of luck,
tammy
 

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I'm afraid to say she has to stop using hair dye. But you already knew that. ;)
I am severely allergic to hair dye, same as your mom by the sounds of it. I get blistering, weeping bumps and oozes, and will wake up 'stuck' to the pillow in the morning. Nothing will get me near the stuff now! After the last patch test I did on the inside of my elbow came up and blistering, it scared me enough to think that's happening on my head, and the rest of my hair could come out too!
Baby shampoo is really good when she does get bad though. Anything that has as little of anything it can in it. Also, I found that using a hairdryer on a gentle heat straight after a hair wash can do wonders for clearing up the scalp and stopping sores weeping.
As has already been said, she could try baby lotions (sparingly), and natural hair colours, but the only thing that will help (in my opinion) is stopping.
Good luck and welcome to the forum!

- Viridian
 

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Hello Kennedy,
It is hard for you seeing your Mum ill and isolated. If ever she wants to come here she will be made very welcome. I have Lupus and so does my Daughter 17. She and my Son nearly 21 have found it a bit worrying having a Mum like me as I have had a few dramas-so I do have a little idea how you must feel.
It is lovely to have you here though.
x Lola
 

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Hi there and welcome :)

I'm sorry to hear about the troubles your mum is having. She might like to join us herself sometime.............we don't bite ;) and it might help her to not feel so alone in her suffering.

I can't use normal hair dying procedures but I get my hair coloured in the hairdressers by having streaks done. They use the older method of a cap so that none of the dye actually touches my scalp. That may possibly be ok for her too.

love
Lily
 
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