Anyone here with Alopecia? How are you adapting your styling habits to cope? | Lupus Forums at The Lupus Site
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Anyone here with Alopecia? How are you adapting your styling habits to cope?

Discussion in 'Looking Good, Feeling Better' started by slelupus, Apr 16, 2013.

  1. slelupus

    slelupus Registered


    Just wondering if anyone else is coping with alopecia. I used to have very thick, fine, curly hair. I lost about 35-40% of it over 3 months this fall/winter and it's begun to fall out more again.

    Just curious as to how everyone's adapting.

    Thanks :bunny:
  2. debatat

    debatat Moderator

    I wouldn't class my hair loss as alopecia, however before diagnosis, my hair came out in handfuls and I had patches of very thin hair with scalp showing. Once on meds it took months for my hair to restore to its natural thickness. Now I only lose hair when I am flaring, but never to the extent before meds, thankfully.

    It is distressing, some members use nioxin products, and this is recommended on the LFA website for lupus patients. If I can find it again I will post the link. Personally I had my hair cut shorter, and this seemed to help bizarrely. Also you can buy hair pieces to cover thinner areas.

    I am sure other members will be along shortly with tips.
  3. ElephantEyes

    ElephantEyes Registered

    I cut my hair short too, it made it look fuller. I also cut in a fringe - it disguised the wisps of hair around my hairline on my forehead. It all really improved once my illness came under control though.
  4. nvsmom

    nvsmom Registered

    I don't have alopecia (I think) but I have had periods where my part seems waaay too wide and you can see scalp every time a breeze blows my hair.

    I too cut my hair shorter into a bob - a style that is supposed to hang straight down and not look too full. I also use some mousse to make my hair lie as flat as possible on my head so the scalp isn't as obvious - plus it disguises all the wispy hairs around my hairline that stand straight up because they are only an inch or so long.
  5. kvturner

    kvturner Registered

    I'm 20, and when I noticed my hairline receding, and hair coming out in large clumps with one of my flare ups, I freaked. I have very thick, healthy hair, so it was unexpected. I had to wash my hair over the side of the tub because there was so much hair everywhere. Ended up getting a deep fringe, from nearly the middle of my head forward, to hide some of the visible hair loss. It's doing great so far. I forget how far my hairline has receded until I have to pin my hair up.

    I use a bit of mousse to keep the bangs down and together, because there is a section of my bangs that has a gap from the alopecia, and it works well. On bad hair days, I use an earwarmer band to wrap around when I put my hair in a pony tail.

    I don't know what I'll do if it gets any worse, though. May just end up shaving it all off and getting a wig/styling short.
  6. Merlot

    Merlot Registered

    Hey, I don't think I have Alopecia but significant hair loss, especially with a flare. My hair started growing back while I was on Benlysta. Now that I'm not being treated with it, the hair loss is back. I cut my hair shorter for the first time. It does help. I always use a styling thickener. I use a powder on my eyebrows. That really helps. be sure to keep the look softer than your hair color to not look harsh. I take biotin and think that helps. When I have my hair cut, it is cut with a center part so that I can style from either side, depending on which one has more hair this week! Finally, for those special occasions, try a little of the old fashioned back combing. It gives more volume. Good luck and God bless!
  7. denalirat

    denalirat rockstar!

    i'm another one who keeps her hair short now. i think short hair looks thicker because the shaft of your hair is thickest close to the scalp. it helps me both with making my hair look thicker and also keeping daily maintenance on the lower end. i also have a wig that is pretty nice and i wear it once in a great while when i miss having long hair. :)
  8. Pentleby

    Pentleby Junior Member

    I've been losing my hair as well but not in patches. I have cut the ends and I've got products which try and stop spilt ends. It seems to be working. It is definitely falling out less. By conditioning it well it seems to break less when I brush it. I'm worried about dying my hair again now. I don't want to put my hair through more stress than it needs to. I've got an unsightly line where I last dyed my hair nearly a year ago. I don't know whether to try and match the rest of my hair to my natural colour and then never touch it again or wait about 10 years for it to grow out! It's taken so long to get my hair as long as this I don't want to cut it off :(
  9. catcove

    catcove Junior Member

    I have discoid lupus on my scalp. I kept my hair long and rearranged my part. At times the dime to quarter size lesions were very red. When it was like that I actually used some makeup that was close to my dirty blondish brown color to disguise my scalp and as the lesions began to be less red I actually got a few highlights put in that were closer to my actual scalp color. The different tones seemed to disguise hair loss. I'm not sure I was really tricking anybody, but it made me feel more confident. Good luck.
  10. proudsummit

    proudsummit Junior Member

    Sad to hear that Bunny. I know someone who also suffered from severe hair loss. She immediately consulted a hair loss treatment clinic and the last time I heard from her, she said that it's getting better.
  11. Puddly

    Puddly Junior Member

    G'day...I have had alopecia on and off for years...but in patches...this time it all went mostly on one I cut it all short and shaved it all off... I found it easier to cope with shaving it all off , than to watch it all fall out...waking up with fur balls every where... I have been making lots of head scarfs and hats , which has given me something different to do...cotton tshirts work best..they are soft on your head as u will find it to be sensitive in spots... I found that stretchy pieces of fabric work well as a base on your scalp..they stay on all day. And are comfortable to wear...I can then put a decorative scarf over the scalp base and it helps the scarf to stay on your head better. I found some sites for making head scarfs out of t-shirts..that helped a great deal...gave me some ideas...I feel so much better now for shaving it all I can have the pleasure of watching it all grow back... Good luck , god bless... If u need some help with the scarf ..give me a bell..
  12. Puddly

    Puddly Junior Member

    This is the base scalp scarf...u can wear it just like this..or u can put a decorative scarf over the top and it will stay all day...this base scalp scarf is very comfortable and soft on your head... Good luck.

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