new patient have lipedema

[carolynsalt]

Hello i am carolyn I have lipedema I am 63 yrs young . just found out in june from Mayo Clinic i have lipedema it took along time but now i know is there anyone else out there like we. seem to be rare.ilook just like my mother.her Arms & Legs were both Big so are mine.I seem to have got it when i was 16 baby born at 17. I think Iam in second stage of it. any suggestions from any body. Thanks carolynsalt

[patoco]

Hi Carolyn

I think you would be amazed as how many people actually have lipedema.

It truely is an orphaned condition that is almost always overlooked or misdiagnosed.

Just wanted to let you know about our lipedema group and blog.

Lipedema, Lipodema, Lipoedema

http://health.groups.yahoo.com/group/li ... =209645515

Subscribe: lipedema_lipodema_lipoedema-subscribe@yahoogroups.com

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Lipedema

http://www.xanga.com/lipedema

There is lots of info on the blog, lots of info and a bunch of friends on the Yahoo group.

Pat

[silkie]

Hi Carolyn

Sorry i missed you posting
I have lipedema as well as primary lymph

Lipedema is as Pat says the orphan, wrongly diagnosed usually put down to weight

Eating does not cause it and all i can say is a healthy diet hight protein
is best.

the Forum lipedema Pat linked you to is brilliant lots of great support and
sharing of experiences and members that are most times more informed than most of the medical profession they live it

Pats blog is brilliant uptodate information well worth reading

caring for lip is daily care of skin, wrapping and support garments

infections are a big problem. so its imperative to care for the limbs

Check out the links Pat gave you they will really be a help

Hugsssssssss

Silks xxxxxxxxxxxx