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.
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.
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.