Like 11 million Americans I have Lymphedema, a condition that most people have never heard of. More Americans have lymphedema and lymphatic diseases than AIDS, Parkinson’s disease, multiple sclerosis, muscular dystrophy and Alzheimer’s disease combined. Lymphedema falls into two main categories in the U.S. Primary or Secondary. Primary Lymphedema can occur at birth or later in life. Secondary Lymphedema is caused by a trauma to the body caused by surgery or some injury to the body.
We are all familiar with the circulatory system with the heart pumping and circulating blood through the body. We are less familiar with another system that plays an important role in our immune system.
When operating correctly the Lymphatic fluid travels through the body through two different Lymphatic channels. Most of the Lymphatic fluid in the body is created by the Thymus, Spleen and Intestines. This is where most of the Lymphatic fluid is created in the body. This is the deep Lymphatic system.
The other Lymphatics run on the surface of the body, close to the skin. The Lymphatic system helps clear the poisons and toxins from the body.
Lymphedema is caused by a blockage in the Lymphatic flow system, similar to having a dam in the river. It causes swelling, sometimes the area impacted feels as if the skin has gotten too tight even before the swelling starts to show. The body seems to respond to the Lymphedema by trying to flush out the blockage and sends more Lymphatic fluid to the area, causing more swelling and more pressure.
For such an important part of the immune system to be overlooked is surprising but true. The Lymphatic system runs through the entire body, including into the brain. Research is now going on to see if Alzhiemers and MS might be the results of plaque build up in the Lymphatic system. The entire Lymphatic system only receives 20 to 40 minutes in medical school.
To be honest until I had Lymphedema I had never really heard about it. Too often many people who deal with this chronic condition are in this same boat – you only hear about it after years of trying to find out what is wrong. The Lymphatic system filters through lymph nodes, which actually remove poisons and toxins from the system. Interesting enough the nodes are shaped like mini kidneys. This is the surface lymphatic system where you find all the nodes and interesting enough some parallels exist to the venal system as the lymphatic veins actually pulsate to help move the lymphatic fluid along in a properly functioning lymphatic system.
I was born with what was called a wry neck – a short cord on the left side of my neck and I had the umbilical cord wrapped three times around to add a touch more drama to the whole delivery. I made my entrance five minutes after the doctor had arrived to deliver me at 5 past midnight. When they didn’t bring me to my mother for feeding during the night she thought it was just the nurses giving her a break. By 8 in the morning my mother was getting worried. The doctor arrived and did an exam on me.
“Your daughter has a jawbone on her left side.” This was the first clue my folks had that I had a birth defect. My face was underdeveloped and was 1/4 inch smaller on my left side.
I had great parents who did massage on my neck and by the time I was two I was like every other little kid. My face being a little lopsided wasn’t a big deal. I was a strong little kid, well almost.
Any bug that went around I caught. A mosquito bite would swell up and let’s not discuss no see-um bites. Some things didn’t seem totally normal but I was busy skiing, skating and living so not much totally slowed me down. I might get sick but I refused to give up on living.
When I was turning 50 we decided to celebrate with a special trip to Las Vegas. We took my mother with us who was in her eighties. We wanted to make the trip easier on her so we took a direct flight from Spokane to Las Vegas.
It was a late night when we arrived in Las Vegas. The late night was followed the next day with a very early morning. We went on an early morning flight and flew through the Grand Canyon.. I started to feel sick during the flight and put it down to the fuel smell.
The next morning I woke up and realized my face was swollen on the left side. It was very noticeable to me but the swelling was still slight. The swelling went down after a couple of days.
That year my face would swell and then go down repeatedly until one day when it stopped going down. The left side of my face went from being smaller than the right to even, then larger, then bigger again.
I also found as hard as I tried I couldn’t lose weight. I joked about walking my dog and how buff he got. My ankles looked great after walking an hour a day that summer. The rest of me not so much.
My doctor couldn’t figure out what was going on. He sent me for an ultrasound as it was suggested I had a blocked saliva gland. I didn’t. I had swelling under my eye and it was starting to impact my sight slightly. I was having trouble sleeping at night as I would wake up choking.
By then I had ringing in my ear, my sense of balance was impacted. My head hurt and my face kept on swelling.
I saw a couple of different specialists looking for answers. The Ear, Nose and Throat specialist told me my face looked not too bad. He did add if I ever found out what was wrong to please let him know. Another doctor tested and said he knew something was going wrong in my face but didn’t have a clue what was causing it.
After two years my face had gotten lopsided and the pain and swelling was starting to impact me working. The cold and heat both bothered me. I was sent to another specialist – this time one who had been an ENT specialist before becoming a plastic surgeon.
We talked for five minutes and then he told me I had facial Lymphedema. After nearly three years I had a diagnosis.
I came home and started researching Lymphedema. All my oddball symptoms were listed in the description of facial Lymphedema.
I had Primary Tarda Lymphedema. Primary from my birth defect, Tarda as it developed when I was an adult and not a child. Your Lymphatic system slows down with age, coupled with me gaining weight were both factors in when I developed Lymphedema.
Primary Lymphedema can also be present at birth or develop when an infant.
After my diagnosis I went for a second opinion and was told by that doctor he had never seen facial Lymphedema so it couldn’t exist. He stated I was just fat. I had to drive home after that appointment and I am grateful I had to drive through a snowstorm.
Well, I managed to lose weight and I still have a fat head, so that theory of just being fat was blown up.
I am unusual as I have facial Lymphedema from a birth defect. Most of those dealing with this condition develop it after cancer treatment. Up to 80% of those who battle throat or facial cancer develop Lymphedema after treatment.
Cancer survivors often find themselves dealing with Lymphedema after their cancer treatments. Breast cancer has a 30 – 50% rate for survivors developing Lymphedema, genital cancers survivors have a higher rate of developing Lymphedema. Survivors of Head or neck cancer develop Lymphedema at a rate close to 100%.
Lymphedema is the gift that never stops giving. There are treatments to help deal with the swelling but there is no cure yet. But there are treatments that help.
The gold standard treatment is compression. Compression garments can help reduce the swelling and also help keeping the condition under control. I wore a compression garment on my head for 12 hours a day for 3 years. That led to a loss of two inches. I now use night time garments to control the Lymphedema in my head.
The other part to controlling this condition is Manual Lymphatic Drainage by a physiotherapist or registered massage therapist.
If lymphedema is caught early and treated then it will remain under control. Early treatment keeps people living a fairly normal life. Unfortunately many people go years, sometimes decades before their Lymphedema is diagnosed.
The longer that Lymphedema goes untreated the more damage is done to the Lymphatic system and to the skin. It impacts your ability to work. If your leg with Lymphedema has swollen up to three times the size of your other leg it is hard to work. On top of the pain you are dealing with your balance is also impacted. You are prone to getting cellulitis, a skin infection that makes you very sick remarkably quickly. Unfortunately once you have cellulitis you are very likely to get it again. A spider bite also becomes much more serious. You have to watch what you do as if you overdo you end up sick.
I have learned to not stress the small stuff as if I get too upset I will usually find I am getting sick just from the stress.
Lymphedema used to be called dropsy or elephantiasis. Primary Lymphedema can be caused from a birth defect or it can be genetic. Researchers are now able to identify some of the faulty genes that cause some Primary Lymphedema. Primary Lymphedema is more common to occur in the legs. Some people with Primary Lymphedema in the 1800’s ended up working in freak shows. People were embarrassed and people didn’t talk about Lymphedema in their families. It is hard to find out sometimes where the Primary Lymphedema came from. I refused to hide and though I stand out when I am travelling I have refused to hide away. I have been called a monster by some uniformed people and have had someone point and laugh at me when I was wearing my facial garment for 12 hours a day. Many people diagnosed with facial Lymphedema end up living like hermits. Many people with Lymphedema end up dealing with depression and feel isolated and alone.
It doesn’t matter if your Lymphedema is Secondary or Primary both respond to compression and MLD. Secondary Lymphedema is also treatable by surgeries that bypass the damaged areas in the Lymphatic system. Even after surgery compression and LMD are still needed.
Lipedema is another Lymphatic condition and it is a fat disorder that causes fat deposits usually in the lower half of the body, primarily in women. Many times people with Lipedema develop Lymphedema.
Currently advancements in imaging and microsurgery is starting to open up innovative treatments with lymph node transplants and rerouting lymphatic flow to restore function to a damaged area of the Lymphatic system.
Living in the internet age also gives support in Facebook groups and some good information and Lymphatic information. The Lymphatic Education and Research Network or the National Lymphedema Network are both great websites to get information on Lymphedema. I have to also mention the BC Lymphedema Association https://bclymph.org as another place for information as I have belonged to the BCLA for 12 years.
I am lucky as I have health insurance that covers me. I don’t have to worry about losing my medical coverage.
I would be worried if I lived in the States right now. Lymphedema is one of those conditions that is considered to be a pre existing medical condition and I would be in danger of losing health care coverage. I am on antibiotics for my Lymphedema and when I get sick with cellulitis I get really sick. Without medical insurance if I had to see a doctor or go to emergency for treatment I might not be able to afford the bill.
It doesn’t make sense to me why protection for people who are born with a condition should be denied medical insurance because of it. We didn’t do anything wrong. To be penalized and refused affordable medical insurance is hurting the people who need the coverage the most.
My Lymphedema has unfortunately spread and I now have full-body Lymphedema. When I travel I wear my compression garments and also a shirt with a special message about Lymphedema. With my compression garment on my head I stand out and people look at me wondering if I am a burn patient or allergic to the sun. My shirt gives them information and if they want I explain about Lymphedema.