Hi, I’m Emma and I’m 7. I was born with Lymphedema in my legs and feet, sometimes it moves to my belly too. I don’t like having lymphedema, there’s really nothing good about lymphedema. I’ve been getting a lot of infections this year and they hurt and make me feel really sick. Sometimes even the […]

I have a mostly unknown, totally misunderstood, incurable, & very lonely condition called lymphedema (LE). Even the medical community don’t know much about it. Both my legs & feet, my right hand, left arm, & left breast are affected. My LE is inherited (but got worse after a fight with cancer in 1994). Family history […]

In 2014 I was diagnosed with stage 4 invasive ductal breast carcinoma. I have spent the last year undergoing five surgeries including a right modified radical mastectomy, ongoing chemotherapy and radiation therapy. After radiation therapy I developed lymphedema in my torso. I have been unable to wear a bra without pain due to the fluid […]

I was treated for invasive cervical cancer in 1977 at the age of 24. A series of surgeries culminated with a radical hysterectomy in which over 30 of my lymph nodes were removed. The swelling in my left foot gradually began appearing in 1982. I was an avid dancer so I thought the swelling was […]

My name is Steven and my wife Kathleen is a physician, a loving mother and also a patient that suffers from Lymphedema Praecox. As you know, lymphedema praecox is a condition that causes severe swelling of the soft tissues within an extremity due to the collection of excessive amount of lymphatic fluid. Kathleen developed this […]

I have primary lymphedema and I wanted to share two storytelling performances I did in NYC on my experience with lymphedema. Thanks for watching, and you can view my website at  http://jakemiles.com. Performance on LE and how it affects me as an adult: https://www.youtube.com/watch?v=41s1HDwxXRQ   Performance on growing up with LE and an associated protein enteropathy: […]

In December 2013 I was diagnosed with breast cancer. I and my family and friends were devastated and scared. For two weeks I went through many diagnostic tests including a lumpectomy. Two days after Christmas I had a radical mastectomy with 27 lymph nodes removed. The sentinel node and three others were swollen with cancer […]

I was diagnosed with Lymphedema in October 1998 – three weeks after a major surgery (radical vulvectomy with lympnodectomy in my left pelvic area.  I was in the hospital for six nights and seven days after surgical procedure- instructions from gynecologist oncologist surgeon were to call him immediately after going home if I developed a […]

I was diagnosed in Dec of 2009 with breast cancer. after 3 surgeries and Chemotherapy and radiation I was left with lymphedema of the left arm and hand. I was very swollen and sore. I had 20 physical therapy treatments to work on massage to help with swelling and had 2 infections that were really […]