Today is Lymphedema Awareness Day across Canada and the United States!
Before meeting Scott, I had never even heard of lymphedema let alone knew anything about it. I’ve learned a lot since then, including about the need for greater awareness of this condition! Despite it affecting more people than ALS, MS, AIDS, muscular dystrophy, and Parkinson’s Disease, combined, no one knows anything about it. Lymphedema is the accumulation of lymphatic fluid in the intersistal tissue leading to uncontrolled swelling (“edema”) that most commonly affects the upper or lower limbs but can affect other areas such as the face, neck, chest, abdomen, or more “personal” areas. It can be caused by a defective lymphatic system (primary lymphedema) or as a result of injury or trauma to the lymphatic system (secondary lymphedema). Currently, there is no cure for lymphedema. Ongoing maintenance and proper equipment and supplies are vitally important to prevent the progression of the condition and the development of very serious and potentially life-threatening complications. Provincial health care is non-existent, or paltry at best (it varies from province to province), and even if you are lucky enough to have some additional coverage from private health insurance, it only goes so far. One pair of compression stockings for Scott runs us over $300!
Scott developed primary lymphedema when he was about 14 after swarms of mosquitos chewed up his ankles at summer camp. Both of his lower legs swelled up (way up!), and the swelling just never went away. It took many doctor’s and specialist’s appointments and several years before he received an accurate diagnosis in high school when a nurse in one of the many waiting rooms recognized what was going on. From there, Scott had access to the right therapists to treat his lymphedema properly. Rather than having to use the pant leg of his jeans to contain the swelling, he went through a rigorous protocol of wrapping his legs from toes to hip and manual lymphatic drainage appointments to bring the swelling down and was then fitted with compression stockings, which he wears on a daily basis, and a ReidSleeve compression boot he wears at night on his right leg, the one most affected. From when he first started therapy, the circumference of Scott’s right leg has gone down by 70%!
It took Scott a while to become comfortable wearing shorts around me, never mind letting me see him wear his boot. I will never forget the look on his face when we were cuddled up watching TV and I playfully stuck my toes in the toe opening of his boot to play “toesy”. It meant so much to him that his condition and everything that went with it wasn’t a turn-off or deterent to me. Even now he still doesn’t like wearing shorts out in public because of the looks he gets from people. While I understand why he feels the way he does, it’s sad to me to see my husband, who I love so much, feel so self-concious about something he has no control over. There is a reality to living with lymphedema that only those who live it can understand. Two years into our marriage, I’m still getting used to waking up to the sound of velcro every morning.
As I’ve learned more about lymphedema, Scott and I have explored the effects of various foods on the swelling in his leg. It turns out that Scott is extremely sensitive to gluten. We tested him on a gluten free diet for a seperate complaint, but found that it also made a big difference to the fluid level in his legs! Our nutritional therapist recommended that Scott transition to a low (animal) protein diet as his kidneys were not processing and clearing protein properly. That was probably our second big breakthrough in helping him further manage his condition. Scott went completely vegetarian for a month and it brought down the swelling in his legs that much more. He has since gone back to eating meat, but in very limited quantities with a strong focus on real food plant protein options, such as quinoa, legumes (not soy!), and hemp. Scott has commented many times on how easily mantained his legs have been since making these changes! There isn’t a lot of information available about dietary approaches to managing lymphedema, but what I have found strongly indicates an anti-inflammatory diet is important. With this in mind, we are exploring the idea of transitioning Scott onto a paleo (not AIP!) diet to see if we can’t get things that much better!
While there is no cure for lymphedema yet, we are both hopeful that we can keep Scott’s lymphedema very well managed and support the rest of his body through a healthy lifestyle and nutrient-dense diet so that he will live a long and healthy life with minimal complications!
So, on this Lymphedema Awareness Day, take a moment and share this with a friend. Together, we can raise awareness of this life-changing condition and perhaps someday find a cure!