A mother and son journey of self-education Managing lymphedema, infections and the teen years
By Bev LanningMy son James was diagnosed with primary lymphedema praecox at age 14. He presented with swelling to the proximal left thigh, which was first noticed by his friends in a hockey dressing room. It took James about two weeks to tell me something was wrong… my first thought was panic! I was an emergency room nurse who immediately had him diagnosed with cancer. Why else would his thigh swell in the absence of injury? A visit to our local emergency department did nothing to calm my fears as the physician expressed concern that there might be an underlying pathology such as a tumour causing his swelling. CT scans and a battery of blood work ruled out a cancer diagnosis, but the explanation given for the swelling was a whole new worry… “primary lymphedema praecox”.
James was promptly sent to the only physician in the province who had an interest in paediatric, primary lymphedema. This began our long journey of self-education and navigating a health care system that
life-long chronic condition. Having to wear compression stockings as a 14 year old was difficult. The daily bandaging and participation in sports such as golf and hockey presented a real challenge.
largely ignores this condition. Thankfully I did meet some very knowledgeable people along the way, to whom I am forever grateful.
Going through the teenage years James not only had to deal with adolescence, but he also had to learn to manage this
Bev Lanning RN, BN, CLT- LANA completed her lymphedema training (Norton School of Lymphatic Therapy – 2008) and Lymphology Association of North America certification in 2011. Bev works as the Regional Lymphedema Nurse for Central Health providing treatment and management to persons affected by lymphedema. James Lanning graduated with a Bachelor of Commerce in 2014. He recently completed his Chartered Professional Accountant (CPA) designation in 2016 and now works as an assistant controller for a group of companies in St. John’s, NL.
About six months after his diagnosis, James encountered his first infection. Multiple fly bites were thought to be the trigger for his sepsis. A lengthy hospital admission was to follow, with a significant increase in his left leg swelling. A susceptibility to frequent infections plagued his teenage years, with every infection contributing to further swelling, worsening his lymphedema. At one point it was suggested he give up his sports as this was felt to be contributing to the frequent infections. James will admit this was a very challenging time in his life.
Lack of availability of physicians and therapists trained in lymphedema management led me to pursue a lymphedema certification. As a nurse I qualified to enroll in one of the recognized schools in North America, finishing complete decongestive therapy training through Norton School in Red Bank, NJ (USA). I did the training primarily so I could assist with
This began our long journey of self-education and navigating a health care system that largely ignores this condition. Thankfully I did meet some very knowledgeable people along the way.
the management of my son’s lymphedema. A career opportunity presented later and I now work full time as a lymphedema nurse/ therapist for Central Health, one of the four regional health authorities in Newfoundland and Labrador (NL). My practice has seen over 500 patients with various types of chronic edema.
I am proud that NL offers services to those affected by lymphedema, but we are still in the infancy stages. Many patients like James who live with lymphedema have few resources to help them manage. Custom compression garments and other equipment used in the treatment of lymphedema are not covered for most people in our province. Poor management often leads to frequent
infections and the potential for decreased quality of life, not to mention the burden to a health care system that already has stretched resources.
I am grateful to James for allowing me to share his story as I advocate for better care for those affected by all types of lymphedema. Raising awareness within the medical community and at government levels is a must if we are going to improve outcomes for those affected.
James today continues his battle with lymphedema. As I write this article he is admitted to hospital for yet another infection. The constant education to his health care providers continues as we try and navigate the system. He is now 25 years old! LP
Editor’s Note:
Hear more of Bev and James’ story at the 2017 National Lymphedema Conference, where both will be luncheon guest speakers.
