Lymphedema Distichiasis – How your eyelashes and leg swelling may have more in common than you think

Today I went for a full eye exam. I have been seeing the same doctor for the past 5 years, because I trust him. I trust him because we made a deal that we shook hands on and so far he has not broken it. I trust a person that can give their word on a handshake. I guess I’m old fashioned that way.

You see, I’m kind of weird. Every optometrist (O.D.) I have ever been to in my whole entire life has always said the same thing along the lines of “Whoah, do you realize that you have an extra set of eyelashes? Do you realize how rare it is? Do you mind if I gather my staff so they can look for educational and training purposes?” And the parade ensues with all of the questions. “Does it hurt? Do you pluck them? Do you feel them scratching you? How long have you had this? Have you tried electrolysis? Will she have them forever? What can be done?”

Um, I didn’t think I was all that special, because my Dad had them too! He went so far as to have electrolysis done, but they grew back! So I knew at least one other person on the planet (like Lymphedema) that had them and just had to suffer. I thought I just had to suffer too.

This doctor I have now actually gave me the name for it – Distichiasis. At our first meeting he asked me if I did mind sending in the staff for the parade. I said “Look, I’ve been through all of this before. I’ll let you bring someone in but I want your top person and don’t ask me to do it again unless you have another top performer here.” He agreed and we shook on it.

A little bit about him without releasing his name, “He is an Optometric Glaucoma Specialist and specializes in cataract and refractive surgery management. He also has extensive experience in the fitting of specialty contact lenses, including hybrid lenses, custom scleral lenses for patients with irregular corneas or post corneal surgery, as well as contact lenses for the treatment of ocular diseases. He has also been a clinical investigator for multiple FDA clinical trials for multifocal lens implants, intrastromal corneal inlays,  LASIK, and ophthalmic medications.”

Cue angelic heavenly music! The perfect match for me!! He said “V, you’ve gotta protect these eyes with contact lenses. The more the lashes scratch your cornea, the more damage will ensue. Don’t pluck them. Leave them long and wispy. When you pluck them, they’ll grow back short and sharp. Bad mix. You’ll get pink eye or worse. If you absolutely can’t stand it, make an appointment for me to pluck them in a sterile environment.” Did you know you can get cellulitis in your face?? Heck to no I’m not plucking mine unless it’s with my doctor.

Anyway, in 2016 my LE doc whipped out an eye magnifier and checked my eyes. I thought he was crazy. The swelling is in my legs, not my eyes! He said, “You have Lymphedema Distichiasis and the 2nd patient in 17 years that I have found. You are incredibly rare.” What the ____?! Haha I explained that my Dad had them too.

I can’t believe it took 22 years to connect my eyelashes with my Lymphedema!!!!

Today I asked my eye doc to take some pictures with my phone. He kept saying that he had never heard of LE Distichiasis in any eye textbook, so he was happy to take the photos. My eyes are dilated, so that’s why they look weird. Many of you have asked, so I thought I would share.

Yes, they are annoying as heck. Like having a perpetual eyelash stuck in your eyes. I am tempted to pluck them, but I fear cellulitis more than I hate the annoyance. For the most part, my contact lenses protect my eyes.

Ah, Lymphedema, the gift that keeps on giving!!!! One of these days, straight to the moon with you! If we find a cure for LE, I still wonder what I’m going to do about the eyelashes!

Wishing you great lymphatic health,


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1 comment

  1. I’m going to call you Alice from now on! You’ve been down more rabbit hole than I thought existed! You are an amazing woman.

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