Has anyone been told they have Milroy's Disease?

[Fatfeet]

[marykatesmum]

Hi fat feet

My daughter has milroys disease she is 17 months and it presented as soon as she was born but recent genetic testing done in London (we live in Derry n.ireland) confirmed she had the VEGFR3 gene

Cheryl

[Fatfeet in reply to marykatesmum]

it was good to hear from you, does anyone else in your family have it? mine developed when i was around 5, moving to the other leg at 10. I am the only one in my family with it and as i have not had any children myself will never know if i would have passed it on. It has not caused me too many problems, mainly shoes and self confidence. Having seen the comments from people who have other forms of Lymphoedema i feel your daughter and i are probably more lucky than them. I hope your daughter is going to be like me (if not better) as i still wear normal shoes (albeit a bit wider and sometimes a size bigger) and wear my stockings (knee length most of the time) and toe gloves in more recent years. There is no pain related to the Milorys apart from some discomfort with my stocking occasionally and if i leave them off too long my feet are a bit stiff, although only temporary and also of course if cellulitis developes (which i have only had once so far - over 10 years ago). The bandaging is good but the stockings are more practical. I too go to St Georges (once a year now). If you have any questions which you may think i can help with please contact me. Sorry that this is a bit rambling.