Personal Primary Lymphedema Info

The Mystery of Hereditary Lymphedema

The other day I stumbled across the following article on Hereditary Lymphedema which turned out to be an excellent read for primary Lymphies, in my humble opinion. It breaks down the different types of primary Lymphedema in a way that I had never seen before.  I had a “EUREKA” moment.

There were 3 distinct take-aways for me from this article:

1. Meige vs. Lymphedema Praecox

News flash both mean the same thing.  From now on, I will refer to my illness as this when speaking to a medical doctor rather than saying primary Lymphedema, since I now know that there are many subsets.

2. Eyelashes

Oh Betty Boop, you’d be so jealous. NOT!

I was surprised to learn that my extra row of eyelashes is connected to Lymphedema. My father has them too. How in the world would we have ever figured that connection out?

See the excerpt:
Distichiasis-lymphedema syndrome is a rare autosomal dominant multisystem disorder characterized by swelling due to fluid accumulation that usually occurs around puberty and the development of extra eyelashes along the posterior border of the lid margins (distichiasis). Distichiasis may range from a few extra lashes to a full set of extra eyelashes.”

Every optometrist I have ever gone to has been so fascinated by that. By now I know, they will pull in all of their staff to have a look at my eyes because it’s so rare. And I think, you’re an eye doctor in the 4h largest city in the U.S., how can it be so rare? They’ve never said the name for it or why I have it.

The problem is the 2nd row of eyelashes scratches my eyes, so I have to wear contacts to avoid impact to my eye health.

3.  Paresthesia

And finally the word I’ve been searching for going on FOREVER!!! That pins and needles feeling from Lymphedema, which for some, makes it mildly to extremely painful.

an abnormal sensation, typically tingling or pricking (“pins and needles”), caused chiefly by pressure on or damage to peripheral nerves.” Source

This whole time I thought I was coming down with neuropathy and kept getting tested for diabetes with negative results.  What a relief!!

For me, this article resonated with me because it answered a few questions I had as someone with primary Lymphedema. I think the conclusion is that I have a double whammy of two types!

Need to Stay Lymphie Strong by being informed on all aspects.  Kudos to the author of this article and thank you to all genetic experts.  It was definitely an eye opener.




  1. Wow! Lucky you in one sense is that you must have beautiful eyelashes!!

    I know you are not a MD, but what do they know anyway, right?
    Do you think the Paresthesia
    is only for primary lymphies or do have you seen anything that suggest you could have
    this same sensation with secondary??? The reason I ask is I started going to a neurologist
    6 months ago for what I thought might be neuropathy in my feet. Both feet. However,
    I only have LE in one leg. This is just very interesting and I will do some research on it to,
    I was just wanting another opinion from someone I trust and respect. Forget the neurologist!


    Alice Watson

    Date: Fri, 25 Sep 2015 06:06:35 +0000
    To: alicelwatson@hotmail.com

    1. Alice, I would still go to the neurologist. In my case, I was tested for diabetes over and over with negative results. What I would tell them is that you have LE, and you want to know if the pain is paresthesia or neuropathy? How can you rule out neuropathy? If it is paresthesia, what can be done?

      The way Google describes it is the same feeling you get when your foot falls asleep when sitting on top of it for too long. I don’t know about you, but that usually subsides in a few minutes. The pins and needles feeling I have is pretty chronic.

      As far as the eyelashes… No, not lucky me. 🙁 The second row turns in towards my eyeball and scratches my cornea. I have to wear contacts to coat my eyes. Another thing LE did to me!! I’m so furious. Daddy actually had electrolysis done to remove his, but they grew right back. We laugh cause I said he was the guinea pig and better him than me. LOL 🙂 Hey you have to find humor in it somewhere, right? Of course, he says anything for my baby daughter, even though I’m an adult. LOL

      Thanks and kind regards,


  2. I have heard from the lady who runs the Philly LE Registry (I can’t remember which university exactly) that Liz Taylor had double eyelashes, which was part of her beauty. I guess Liz got the good part of LE without the bad. I just got the bad without the good. 🙂
    Thanks for sharing the info.

    1. Laura, thank you for sharing that fun fact about Elizabeth Taylor. You are absolutely correct. I just confirmed. I knew about her blue-violet eyes, but not the eyelashes. Wow! But having double eyelashes is no fun. My second row scratches against my cornea. Without my contacts, it’s literally like having an eyelash in your eye. Very irritating. Thanks for reading my blog and for sharing your thoughts. I learned something. Take care. 🙂

  3. I have distichiasis on my upper eyelids.. And luckily those extra rows of eyelashes are upturned and they don’t create much problem in my vision.. I also have central heterochromia..blue at outer part of iris and brown at inner part of iris..I suffer from many infections.. Especially respiratory infections.. I have been suffered from typhoid fever for 5 times..now I am 17 years old..My immunity power is very low.. I had a skin allergy problem due to excess rate of immunoglobulin E..my father and my 14 years old sister also has distichiasis….so I think it is hereditary.. What are the chances of this disease being transferred to my children?..and what are the chances of having CHD and lymphodema? Please reply.

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