National Organization for Rare Diseases (click to visit their website)
Primary Lymphedema
Primary lymphedema is a rare congenital condition that results in the accumulation of lymph fluid, usually in the lower extremities (but can be anywhere in the body). The swelling may be present at birth, or may surprise its "victims" a bit later in life (usually around puberty or young adulthood). I use the word victim from experience. I was "attacked"around age 11 by this mysterious, inflammatory intruder. Lymphedema interrupted my life, frightened my parents, perplexed my doctors, and left me with physical and emotional scars. It took a dozen years to assert command over my lymphedema, but I am no longer a victim.
Secondary Lymphedema
Secondary lymphedema results in many of the same symptoms as primary lymphedema (swelling, pain, heaviness, skin changes, etc.) However, instead of being caused by an improperly formed lymphatic system, secondary lymphedema is caused when an intact lymphatic system is injured. Examples include: surgery, radiation, trauma, cancer, infection, and May-Thurner Syndrome (MTS). Recently, I discovered that what I thought was primary lymphedema with an onset at puberty, was actually secondary lymphedema caused by MTS.
May-Thurner syndrome (MTS)
May-Thurner syndrome is a rare medical condition that occurs when the left illiac artery compresses the left illiac vein. It can happen on the right side, but it is more common on the left. This compression increases the risk for deep vein thrombosis (DVT), also known as blood clots. It also may result in lymphedema.
Alone We Are Rare. I love the quote that comprises the title of this post. I don't personally know many people who have lymphedema, and I don't know a single other soul who has MTS, let alone someone who has both of these conditions. I feel rare, and it is easy to let that transform into lonely, depressed, and anxious. It is a dangerous and precarious place to be because a gentle push may lead to hopelessness and defeat.
Together We Are Strong. We need to find "our people" so we can feel supported enough to raise our voices. I am so grateful that I found my angels at Therapeia Lymphedema and Stanford Here, I found my bridge into the Lymphedema and May-Thurner syndrome worlds that existed in reality and not just in my day dreams. I was awakened to compression garments, night-time garments, wrapping, manual lymph drainage, exercises, diet changes, and most important of all....a community of people with lymphedema and/or MTS who knew my fears, my insecurities, and my challenges.
Within each other, we will find courage and strength. The task has fallen on us to educate one another and our doctors. We deserve better medical care and adequate insurance coverage. I believe the most effective way to improve our daily lives and to see a better future is to come out of our cocoons and raise awareness together.
It is with this thought that I wish to start my blog: "Alone we are rare, but together we are strong."
Nicole, I am interested in knowing more about the change in your diagnosis! I too have been a life long sufferer of Lymphedema (since age 14 now 39) and 5 years ago when having a complete LE workup May Thurner was found on CT scan. I have symptoms that my LE doctor tell me aren't LE symptoms and I am starting to wonder if these are symptoms of my May Thurner. My LE is in my left leg. I am trying to figure out where to go from here. Your blog has inspired me to dig deeper.
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