A champion of perseverance

By Laurie Desaulniers

Laurie Desaulniers is a determined 24-yearold living with lymphedema in both legs. Although Laurie’s journey is full of obstacles, she will stop at nothing to realize her dreams and lead a happy life, surrounded by her family and friends. We were particularly touched by Laurie’s positive attitude and strength of character, which will surely inspire our readers. The following transcript is of an interview with Laurie by the Lymphedema Association of Quebec (LAQ).

How I discovered I had lymphedema

It all started in 2015, when I was 14 years old and completing the final exams of the school year. I was with my friends, and we noticed that my right leg was more swollen than the other. My mother, worried that it might be phlebitis, took me to the hospital - after I had convinced her to let me finish my exams first. The doctor didn’t find anything, so we went to a second hospital. It was the beginning of a journey of perseverance! After a series of medical imaging tests, a pediatrician told us that I had primary lymphedema in my leg. She told me it’s a disease for which nothing can be done. The paediatrician gave me a prescription for a kneehigh compression stocking but didn’t refer me to a specialist - as if I could deal with the condition on my own! It was the summer of the year that I turned 15 years old when I officially found out I had lymphedema for the rest of my life.

Reacting to the diagnosis

I cried, of course, and so did my mother. But right away, my mother told me to keep hope alive, and everything she did for me means a lot. At the time, it seemed crazy to have lymphedema without really knowing why. I was told it might be caused by a mosquito bite on my ankle, or a back injury I sustained while playing soccer. Personally, I think the most probable reason was my growth spurt, which happened around the same time. Since we had

to “fix the situation”, my mother and I decided to find a better compression garment than the one originally prescribed, as we thought the knee-high stocking would cause other problems.

After the initial shock, I no longer viewed the diagnosis as a catastrophe, perhaps because I didn’t fully grasp its potential impact. I told myself we’d find a solution. In fact, I even have a rather funny memory from that time: my friends and I would press our fingers into my leg to make smiley faces that stayed for five minutes, and it made us laugh!

While carrying on with my life as a teenager, my mother, convinced that there must be something that could be done, started seeking help. Several non-specialized therapists “tried” to help me with different approaches, including physiotherapy exercises, naturopathy, osteopathy, and even a sauna tent. Nothing worked. Finally, my mother found a certified lymphedema therapist in Montreal, but over 125 kilometres from home! Michel Eid, a therapist specializing in lymphedema treatment, changed everything for me. At the first appointment, he introduced me to a 24-year-old lymphedema patient from Saguenay who couldn’t dress normally because his leg was so swollen. This left a strong impression on me. I quickly realized that I needed to address my lymphedema and start intensive treatments.

Adapting to intensive treatment

For 14 consecutive days, my mother and I commuted between Magog and Montreal, at least a 90-minute drive each way. Every day, my therapist performed lymphatic drainage and applied multi-layer compression bandaging. I was encouraged, because this intensive treatment transformed my condition! I could see the size of my leg getting smaller with each passing day. Initially, my affected leg was 8cm larger in circumference than my healthy leg. After the

Laurie Desaulniers lives in Orford, Quebec, working as an IT specialist. In her spare time, she is actively involved in many sports and plays goalkeeper for her women’s ball hockey and ice hockey teams. Laurie is proud to be an ambassador for the lymphedema cause.

intensive phase of treatment, the circumference of the right leg had decreased by 2cm. During this time, I was in the ninth grade in a basketball-focused program and was also taking evening driving lessons. This meant I had to miss school in the afternoons for my treatments. During the long commute, I caught up on missed coursework and studied for all my other subjects, including driving. For this class, I had no choice but to wear hockey pants over my bandaging. In addition to my parents’ support, I was fortunate to have my friend Alex-Sandra StPierre there for me, helping me stay strong.

Transitioning to the maintenance phase

Because I was a growing teenager, my next challenge was to control lymphedema during all these physical changes. My therapist was amazing in teaching me how to do my own lymphatic drainage and apply multi-layer bandaging. Over time, my leg transformed from resembling a pole to having a more natural leg shape. Michel Eid also aided me throughout the first year for obtaining custommade compression stockings from Europe. These stockings were so thick! But I wore them because I saw that they were effective. I really appreciated that the Quebec Medicare covered the cost of several garments per year for adolescents. It allowed me to experiment to find what suited me best and to navigate through my growth phase. Being very athletic, I also had to adopt new habits to protect my compression stockings and prevent damage.

To make my life easier, my Montreal therapist took the initiative of referring me to a local therapist in my area. I began teaming up with Claudia Desrosiers, a physiotherapist trained and certified in lymphedema treatment. I’ve been seeing her for seven years now. Initially,

it was once a month, but we’ve moved to every two months because I manage well on my own. Claudia performs lymphatic drainage, acts as a counselor to answer my questions about my condition and manages the ordering of my compression stockings. I really trust her because she stays up to date with her knowledge and we have a strong bond.

A second ordeal awaited

Three years later, at the age of 18, I was working as a cashier, standing all day long. Suddenly, I felt a swelling in my other leg. I immediately recognized the symptoms of lymphedema: it felt like I had water retention around my ankle and on the top of my foot. This time, I was lucky enough to know what to do and to treat myself immediately with one of my compression garments. I still took the time to get a doctor’s diagnosis for my left leg, but I now have custom-made garments for both legs, covered by the provincial Medicare program.

Lymphatic surgery as a complementary treatment As I was developing lymphedema in my left leg in 2018, my father read an article in La Presse about Dr. Marie-Pascale TremblayChampagne, a plastic and cosmetic surgeon specializing in the treatment of primary and secondary lymphedema. With the support of my parents and Claudia Desrosiers, I was able to consult Dr. Tremblay-Champagne and get on the waiting list for surgery. It was in December 2021, between two waves of the pandemic, that I underwent surgery for my lymphedema. The surgeon performed four lymphatic-venous anastomoses (LVAs) on my right leg, the one most affected. Following a month of recovery with no sports activities, the results were already remarkable: I had lost an additional 2cm in leg circumference. At my first hockey game, I remember putting on my goalie pads and adjusting them the same way on both sides. When I got on the ice, I was amazed to feel that I no longer had any extra weight to drag around.

Lymphedema has never been an obstacle for me

I’m an active, sporty girl who plays soccer, basketball, and hockey. I’m the goalkeeper for my women’s ball hockey team – arguably the toughest position for legs. If I have to block a shot with my right leg, I’ll do it, and if there’s a problem, I’ll adjust. But that’s never happened so far. I’m convinced that being active helps me a lot. My university studies went well and today I work as a representative for an IT company. I love my job. In fact, it was more my family who were concerned for my future. For my 18th birthday, my father read a beautiful letter in front of everyone talking about my illness, and I could see how much it affected him. But I’ve always felt confident and well supported. Instead of feeling sorry for myself, I take care of my lymphedema the way I was taught, and for the rest, I just go for it!

It felt incredible! My skating is now faster and more even on both sides. I have to say that more than two years after surgery, I continue to maintain self-care and wear my compression garments daily. My goal for getting surgery was not to stop wearing compression stockings - contrary to what my mother had hoped for me. I just wanted to feel lighter and improve my leg. And since Dr. TremblayChampagne assured me that she wouldn’t aggravate my condition and that she inspired trust in me, I didn’t see any harm in going ahead with the surgery.

The surgery has also brought me other benefits, such as the ability to wear shorts in the summer and go to the beach without my compression stockings for long hours. I now recover more quickly from air travel, and I healed quickly from cellulitis following a wasp sting in 2023. Today, my right leg is nearly

equal in size to my left leg, with the most critical part of the calf remaining only about 2cm larger. This marks a huge improvement since my initial lymphedema diagnosis in 2015.

What helps me cope

I’ve always had a good circle of friends and a great family, so things went well for me. The important thing is not to isolate yourself and to find the right specialist. Perhaps my fortune also came from being very athletic. On one hand, I didn’t wear a lot of dresses, so it didn’t affect my style too much. On the other hand, my level of physical activity helped my condition. Certainly, there are people who still ask me funny questions like, “Why do you wear beige clothes that don’t suit your age?” It makes me laugh! Each time, I simply take the time to explain what lymphedema is.

Care-related expenses

When I was in school, my father had excellent insurance coverage through his employer. Unfortunately, this isn’t the case for everyone. Today, I have good group medical benefits through my work. So, in my case, we only had to pay for the portion of compression garments not covered by Medicare. I’m really lucky and fortunate. To tell you the truth, if I had to change jobs, I would seriously consider the insurance benefits factor.

My message for people living with lymphedema

My story isn’t about drastic change. It’s a story of perseverance, quick action, and being surrounded by the right people. So, in summary, I truly believe that if we follow our treatments, stay resilient, wear compression garments daily, and remain active, we have everything we need to continue living our lives to the fullest.

Acknowledgements

• This story was originally published in the August edition of L’info AQL and adapted with permission. Laurie would like to thank her team of specialists.

• Michel Eid, massage therapist, certified in lymphedema treatment by Vodder School International.

• Claudia Desrosiers, physiotherapist, certified in lymphedema treatment by Vodder School International.

• Dr. Marie-Pascale Tremblay-Champagne practices lymphatic surgery at Hôpital Maisonneuve-Rosemont.