Hey guys –
So, we’ve been chatting on Facebook quite a bit about hair loss, thinning hair, hair vitamins, etc. Did you know that lupus, which is a long-term autoimmune disorder, can affect the skin, joints, kidneys, brain, and other organs? Well, if it can affect skin, that means it can also affect – you guessed it – your hair. My father recently sent me an article on lupus and hair loss, and I wanted to share it with you all:
Most people don’t even notice the 50 to 100 strands of hair that they usually lose every day. With systemic lupus, the situation can be very different, with the loss of hair much more dramatic and noticeable.
Lupus hair loss can be caused by the disease itself, as the immune system destroys hair follicles, or by medicines such as prednisone and immune system-suppressants-in which case hair loss often stops once the medicine is stopped.
Hair may fall out in strands, or in clumps with the slightest pull, and sometimes it just thins out and gets very fragile and breakable.
If you are among the half of all people with systemic lupus who struggles with this problem, here are some ideas about what you can do about it:
Action steps
Losing hair can be scary, but it’s usually treatable and often can becovered up. It may take a while for hair to grow back-sometimes 6 months ormore-but eventually it usually does unless it’s caused by skin (“cutaneous”)lupus that leads to a “discoid rash.” (Patches of thick and scaly red“discoid” rash can scar hair follicles and cause lasting hair loss, so besure to talk to your doctor about your options if these develop. “Alopecia”is the medical term for hair loss.)
For most hair loss, you aren’t powerless! Here are some strategies to try:
- Refresh your hair style. Ask a hairdresser for ideas to cover up bald spots. To make hair look thicker, try a cut that layers. When blow drying, try lifting hair up and away from the head. Or ask about dying hair to cover up bare scalp that otherwise might show through.
- Consider hair extensions. If you still have some healthy hair and are just missing some patches on the sides (not the top)-and aren’t actively losing hair-consider hair extensions. Pre-made and custom-made extensions are available, and different ways to attach them (sewing, knotting, or adding in through tiny links are often best to avoid contact with chemicals, adhesives glues) and heat. (Elle says: Yes, PLEASE stay away from glue in weaves! These are horrible for your hair anyway, and may make your condition worse.)
- Try a wig. These days wigs are so well-made that most people can’t tell you have one on. To start take a friend to just look around. You may well feel a lot better when you see what options there are! (Elle says: Sometimes, I take issue with buying a $300 wig “for fun,” but in this case, I recommend getting a wig with high quality lace. Cheaper wigs can have very hard/tough lace, and can be hell on your edges in addition to irritating your scalp.)
- Experiment with hair wraps, scarves, bandanas, accessories-tips are on the Internet! Enter “hair loss” along with the term “wrap,” or “scarf” in Youtube.com and you’ll get more free video demonstrations and ideas than you can handle! (Elle says: TURBAN! There are also several ways you can tie scarves to look stylist and chic. Check out YouTube for tutorials.)
- Last resort: cosmetic surgery. For extreme and permanent hair loss, stretching the remaining hair to cover what’s been lost may be an option, or even transplanting hair from another part of the scalp.
If you have lupus and are losing hair, do NOT experiment with over-the-counter hair loss treatments (Elle says: You know what that means…no Megatek or coochie cream!). Talk to your doctor about treatment options.
What’s NOT to blame for lupus hair loss?
While it’s only common sense to avoid harsh chemicals or even very tight braids that pull on your scalp, you can’t really blame serious hair loss on a lack of vitamins, washing your hair a lot, or using hair colorings or other common hair products. Some hair loss follows the pattern that your mother or father experienced as well, and is totally normal.
I sincerely hope this never happens to any of you, but I did want to share. Hair loss for a woman is very difficult, and there are several techniques talked about on the hair forums, but if you have a medical condition…go to your doctor! Do not start a thread on Naturally Curly or Long Hair Care Forum. GO!
xoxo
questfortheperfectcurl.com 
Heu Elle THANNNNK YOU soooo much for shedding some light on us lupies! We often call ourselves the “invisibly ill” bc most ppl make the mistake of looking at us and assumming we’re well. Can’t tell you how often I hear “well you dont look sick” ugggh! I was diagnosed 5 yrs ago about 2 weeks before I cut my hair. I can attest that shedding and thinking comes with the territory but I can also attest that with proper care and maintenace your hair can still grow. I have APL hair when stretched. I had become lackadaisical about my hair care routine but when the year changed so did my attitude about alot of things on health and hair. So I’d like to personally thank you for all your product advice and tutorials bc you’re definately whipped my hair into shape!
This is very interesting. My grandmother suffers from Lupus and has lost quite a bit of hair since being diagnosed, although she strives to maintain it daily. Thank you for the information.
Thanks for posting this! I don’t have Lupus but I do have MS, thankfully that doesn’t cause hair loss, but I also have PCOS which can cause excessive shedding. I’ve had PCOS for over 13 years, and though I’ve lost all the weight and have regular cycles, my hair still sheds. I’m just now seeing a doctor to hopefully slow it down. I don’t know why I waited so long…
Very informative! And what you said at the end is so true. Go to the doctor! Hair fourms can be a great place to find support, but they are not ideal for seeking medical advice. Sure, some of the ladies may be doctors but they don’t know you like your regular doctor does/should.
Elle, that is good information, but I know first-hand that to be true. I have a niece who has Alopecia; which she has had for almost 10 years. She lost ALL body hair. Last year it was discovered she has Lupus. We had no idea it had anything to do with the hair loss, but it does, so this is a very very informative and well-written article. Thanks Elle
I too suffer from Systemic Lupus and the drastic hair loss was the reason I did the BC 4/21/11. No more hair loss since then and it’s growing like a weed. Thanks for sharing that article;-)
My sis has lupus and usually when she is having a hard time or going back on a strong medicine, she will shave her hair all the way down. Her hair has changed also over the years, it’s thinner now where it used to be thick.
Hey Elle!!
I’m so glad you posted this article. As a subscriber of yours and someone whose been battling Lupus for the last ten years, I’ve always been extra careful caring for my hair.
I have and still have hair loss and extreme hair shedding. I know one of the reasons why I love your blog, and YT vids is not only because of how you handle your hair, but also your personality and the fact that it is only one fabulous facet of you. You are not your hair!!
Much Love,
Shannon
Aw, thank you, Shannon! And I’m sorry to hear about your condition, but I hope you have it somewhat under control. Do you also use hair products that are supposed to thicken hair?