News

Give to a Cause You Know

Connor Looby is LE&RN's Youth Ambassador and suffers from a rare lymphatic disease (intestinal lymphangiectasia) and lymphedema. Connor is only 7 years old, but he has joined in raising awareness of his disease and helped to raise funds to find a cure. Will you join Connor and make a generous end of year donation?
Connor Looby is LE&RN’s Youth Ambassador and suffers from a rare lymphatic disease (intestinal lymphangiectasia) and lymphedema. Seven-year old Connor has helped to raise awareness and funds to find a cure for the millions who are afflicted with lymphatic diseases. Will you join Connor in his fight and make a generous donation today?

If you are thinking about giving a charitable donation before the end of the year, I recommend considering the Lymphatic Education & Research Network (LE&RN).  This organization recently changed its name from the Lymphatic Research Foundation and expanded its mission after 15 years of providing hope, inspiration and progress to the millions of people who suffer from lymphatic disorders like me.

Simply put, LE&RN has done more to put lymphedema on the medical radar and to directly sponsor lymphatic research than any other organization of which I am aware.   Continue reading “Give to a Cause You Know”

Motivational, Personal Stories, Tips

Sex and Lymphedema

Randy GlasbergenThe first time my husband Luke and I became intimate, he didn’t know I had lymphedema.  Since the swelling in my legs is mild, it’s not something he would have easily noticed (especially since he was quite distracted!).

Funny, it wasn’t the lymphedema as much as the compression stockings that I wasn’t ready to share with him. Laying naked in bed baring your body’s imperfections, even if it is a foot or arm that is fatter than the other, is beautiful – that’s what intimacy is all about.  But for someone with lymphedema, getting to that state can feel less than sexy.  There was no Dance of the Seven Veils for Luke.

In the movies, when they get hot and heavy, they don’t do a closeup to reveal the ingenue’s compression garments and watch while she takes a time-out to strenuously remove them.  And that’s not a scene I wanted to play out either.  At some point when we were getting close, I excused myself to the bathroom, yanked off my stockings, put my clothes back on and rejoined Luke.

Continue reading “Sex and Lymphedema”

News

Lymphatic Research Foundation: 15 years of hope, inspiration and progress

On Sunday, September 8th at 11 a.m. the Lymphatic Research Foundation (LRF) will host their 2013 Walk for Lymphedema and Lymphatic Diseases.  It will be at Eisenhower Park in East Meadow, NY.  Lymphedema Diary is  one of the sponsors of this worthy event.

Melanie Chaite (right) and me at the 2012 LRF Walk.
Melanie Chaite (right) and me at the 2012 LRF Walk.

LRF was founded the same year that I came down with lymphedema, so I feel a certain kinship with this organization.  It was founded by Wendy Chaite, whose daughter was born with systemic lymphatic disease and lymphedema.  Frustrated by the lack of available medical and scientific answers – to which readers of this blog can surely relate – Wendy quit her successful law practice and founded LRF to promote research of treatments and cures.  Wendy’s daughter, Melanie, is going into her junior year at New York University and was the keynote speaker at last year’s walk.  You can watch a video of her speech here.  It is a must watch and only about 5 minutes.

Continue reading “Lymphatic Research Foundation: 15 years of hope, inspiration and progress”