Do I have Milroy's Disease?

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Do I have Milroy's Disease?

Postby ma1290 » Mon Jun 18, 2007 10:37 pm

I've been coming across the term "Milroy's Disease" in a lot of the reading I've been doing. Here on the site Milroys is referred to as a condition that "usually presents itself at birth with the swelling of one or even both legs." I was born with swelling in one leg.

I would think that such swelling would be a definite indication that I have Milroys. However, in almost all the articles on Milroys that I've read, entire families with lymphedema are mentioned. For example, one site referenced a study that stated "This is a review of the condition [Milroy's] based on the clinical findings in 71 subjects from 10 families. All 71 individuals have a mutation in VEGFR-3."

With help from both sets of my grandparents, I've concluded that nobody in the past five generations (my parents, grandparents, great grandparents, and twice more their parents on both my mother's and father's side) had LE. Is it a possiblity that I'm just the first to get Milroys, or might I have an isolated genetic mutation thats not related to Milroys?

Or maybe I need to ask a doctor...?
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Postby patoco » Mon Jun 18, 2007 11:11 pm

Hey Adam :)

The interesting thing is, is that most doctors, if they have even heard of lymphedema refer to it as Milroy's...even when its not.

If you do have a family history then it is easier to diagnos.

However, there are also about 30+ syndromes that have lymphedema as an associated complication. These would present with other problems too that are associated with the base condition.

A list can be found on the left under Hereditary Conditions and under Syndromes of Lymphatic Dysplasia.

But, you can also be the first to have Milroy's. The firstperson to carry a enetic mutation in a family is called the "Proband." We actually have members who are the proband (tested/confirmed) in their family.

When I was diagnosed, it was thru family history in combination with my own medical history. Later, lymphosciintography confirmed the missing lymph nodes.

What's even wierder in my family is that fact that it has now skipped two generations and appears to possibly have disappeared from our family. This can happen as well. After slamming us for over 120 years...I'm hoping this is true.

Ultimately, the best confirmation would be a genetics test.


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The First in the family to have Lyphadema

Postby bo dupre » Sun Dec 16, 2007 9:10 pm

Hey Adam I was born in 1955, and Swelling in both legs and feet from the knees down presented itself at that time. My mother told me that The Dr's called Milroys disease . Interesting thing is that there isn't a recent trace in my family history neither my Father or mother, or either sets of grandparents, or any of their children had it as well.

Even more intersting is my First born had it, and none of my other 3 children had it. Plus none of my firstborn's 4 children have any signs of it.

Good luck in your search!
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