Eyelashes falling out

4 posts in this topic

I know that hair loss is a symptom of scleroderma, and people with linear scleroderma in the forehead (like me) often report hair loss where the scar meets the hair line. I don't mind hair loss so much because I've been shaving my head for years anyway, but what's really annoying is that these days my eyelashes seem to be much, much more likely to fall out. Almost every time I look in the mirror I see one on my cheek bone or just hanging among the other lashes, uprooted from its follicle. They get in my eyes, too. And even those that haven't already fallen out seem to be ranged very haphazardly, like the follicles have warped and are pointing in random directions. And I'm worried that one day they'll all fall out and I'll look even more freakish than I do now. 


I know many people on this forum have much worse problems than this and it's not something to make too big a deal of, but any help or advice would be appreciated.  Has anyone experienced this? Does it just keep getting worse or does it stop at some point?


PS. I'm getting UVA1 light therapy but I have to wear eye protection so it doesn't treat the eyelids. 



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Hi Eoinok,


I'm very sorry to hear that you're losing your eye lashes and I can understand how distressing this can make you feel. Unfortunately, as with many diseases, it's the little things that can make such a difference to your quality of life.


Thankfully, I've not experienced this problem, but I've included a link to another thread about eyelash loss, which I hope you'll find helpful.


Kind regards,

Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Eoinock,


Congratulations on getting the UVA1 phototherapy treatments. Even though you are using the goggles (as everyone has to), the UVA1 is still affecting your entire immune system, so hopefully that will also help your eyelashes eventually.


In the meantime, discuss with your dermatologist the risks/benefits of using false eyelashes or even eyelash growth treatments. Semi-permanent eyelash extensions last for about 4 weeks at a stretch and they have "normal" short eyelash styles for both men and women with medical conditions (not for beauty or glamour looks.)


Bald or shaved heads are very mainstream, but missing eyebrows or eyelashes can distract others from making direct eye contact, so it is usually well worth it to compensate for it in whatever way you can. Please let us know what you decide to do, and how it works for you.



Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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Hello Eoinock


Sorry, I have just read your post. I don't think facial changes would be underestimated by many people. Most would be so glad it didn't affect them because it's not a small matter by any means.


I hope that the problem has either corrected itself or you've found a way to mitigate the impact.


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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