A Day in the Life of a Lymphedema Left Leg Patient – Janine Leitch

 I have been living with lymphedema in my left leg since 1998. A tumour was removed along with lymph nodes, an abductor muscle and a couple of veins from my upper inner thigh.

 I was never told I was at risk of getting lymphedema and little did I know that it would affect me for the rest of my life. After learning that my lymphedema wasn’t going away, I made a decision to manage it the best I could. I was determined not to let my leg get worse, swell more, or develop cellulitis.

I try to stay positive and practice self-care:

Each morning, I wake up and remove my thigh high leg compression garment before getting out of bed and hopping into the shower. Before fully dressing, I take time for self-MLD (manual lymphatic drainage), diaphragmatic breathing, and stretching exercises. Then I apply Patrick Curelle lotion to my legs and put on my clean 30–40 mmHg compression flat knit stocking before finishing getting dressed.

This has been my daily routine since my SAPL (Suction Assisted Protein Liposuction) procedure with Dr. Granzow in June 2022. I wear my compression stocking 22 hours a day—even through the night—unless I’m having MLD therapy with my therapist. I have MLD weekly unless one of us is on vacation or ill.

My ankle does need extra care as it tends to swell the most. If needed, over my compression stocking, I wrap a bandage with swell spots on either side of my ankle during the day to help with this. I also sometimes use calf and knee Ready Wrap. When I travel, I always wear 16-20 mmHg compression socks on both legs and over my compression stocking for added compression. If warranted, I will use my compression pump.

I do exercise and move at least 5 times a week:  walking, hiking, yoga, attending my weekly Pilates class and my twice a week resistance training workout at my gym.
What’s kept me going all these years is simple: I don’t want my leg to get worse or infected. That’s always been my motivation. I do everything I can to control the swelling. It’s not always easy, but I try my best. I have never had cellulitis.

I have learned you have to be your own advocate, be motivated to help yourself, to never give up and to try to be positive even though some days are hard and tedious. You need to find out what works for you. It does take diligent effort and trial and error, but well worth it in successfully managing lymphedema.

Surgery has been an option for people dealing with Lymphedema for years, but early surgeries weren’t the most humane. 

Debulking was a technique that involved opening up the skin and removing tissue on the lymphedema area down to the facia and then doing skin grafts. 

In 1912 Sir Richard Henry Havelock Charles was the first to mention using debunking surgery. He reported on 140 scrotal filariasis cases treated by debulking. By the mid twentieth  century the technique was called ‘the Charles procedure’ and it was a surgery done when the patient was stage 4.

Over the years variations of the technique were used but it was highly invasive and extremely painful for the patient.

SAPL or Liposuction

A modern technique which is used for both Lymphedema and Lipedema patients is a modified type of liposuction. This technique allows reducing the lymphatic tissue in the arms or legs. Lymphedema typically leads to an increase in adipose tissue that can be removed with liposuction.

Adipose tissue increases with Lymphedema and it doesn’t depend on the length of time you have had lymphedema.  

Variations of this technique have been in use for over 20 years now. Pioneered by Dr Hakan Brorson (Skane University Hospital, Malmo, Sweden) he has trained teams all over the world in his method. 

Both Lipedema patients and Lymphedema patients have benefitted from this technique. Again - this is not a cure. After surgery you have to remain in compression after the surgery. But Dr Brorson has followed patients for 21 years with Lymphedema and 11 years with Lipedema and they have not had any reocurrances.

Fat cells in Lymphedema patients are larger in areas with Lymphedema compared to unaffected areas. Interesting in animal studies chronic inflammation leads to increased adipose tissue. 

This is not a quick fix as it may take months to recover from the procedure and after care for patients is very important.

It has been reported that after surgery patients quality of life increases. Also with the increased blood flow the cases of cellulitis drop by up to 87%. 

Lymph Node Transfers

As imaging techniques improved more was learned about the lymphatic system. Improvements in micro surgery also brought new ideas and one was Vascularized lymph node transfer surgery (lymphovenous transplant)

The idea seemed simple. Take a section of lymph nodes from a healthy area of the body to the area that has damaged lymph nodes and restore the flow. The surgery is done in hospital and requires a few days of rest before you resume your normal activities. 

It sounds amazing and it has proven life changing for some patients that undergo this surgery. As surgeons become familiar with this technique and combine it with imaging functioning lymph nodes can be transplanted to a new location.

The drawback to this technique is that if the lymph nodes removed from the secondary location can cause lymphedema to occur in the donor location. 

The first transplant of lymph nodes from the groin flap was reported in 1982. Today the groin flap is still the most common location for getting the lymph nodes for transplant. There are other locations that provide lymph nodes suitable for transplant. The choice of location depends on the individual patient.

Although originally it was reported lymph node transfers only helped 30% of patients with the improved methods used now the number is much higher.

Dr Granzow developed a method that showed a reduction in volume of 86% in legs and 111% in arms and statistically significant reductions in the needs for lymphedema therapy and compression garment use. 

Lymphaticovenous anastomosis
(also referred to as lymphovenous bypass) 

We always refer to the lymphatic and venal system as separate, but they actually do intersect on a daily basis. When the system is running properly both systems coexist together. When the lymphatic system is damaged then swelling starts causing lymphedema. 

LVA or lymphovenous bypass uses microsurgery to connect the lymph vessel to the vein. 

LVA was actually tried in the 1960s, but microsurgical techniques using robotic surgery methods were not available then.

Now with the surgical and imaging improvements LVA has become more practised and it now considered one of the gold standard treatments for Lymphedema.

Once the blockage has been identified then using lymphangiography then the surgeon chooses the vein. 

Before the surgeon starts to cut the chosen area local anesthetic containing epinephrine for hemostasis in order to limit bleeding from the dermal edges. Isosulfan blue or Lymphazurin (Covidien) is injected distal to the incision site, which is absorbed into the lymphatic vessel and allows for visualization of the lymphatic during the dissection. 

The size of the lymphatic and venal veins are tiny, some 1 mm, other smaller mean that this is micro surgery. 

When the connection is made then the excess fluid in the lymphatic system starts to drain into the venal system. 

Patients report less heaviness in their limbs, reduction in infections and cellulitis. Studies with a minimum 1 year or longer have shown promising results for treating Lymphedema.

After having surgery patients have to wait for 4 weeks to let the bypass heal before using compression garments or manual lymph drainage.

After surgery patients notice an improvement in dealing with their lymphedema. Reducing the need to wear compression sleeves, using pneumatic pumps or needing to go for manual lymphatic drainage  or massage with Lymphedema therapists.

There is a human component in any surgery you decide to have. That is the expertise of the surgeons and their teams. You want a surgeon who is familiar with the technique that you are getting done. You also want to make sure that proper aftercare has been arranged.

Finding a lymphatic therapist is important to help dealing with lymphatic diseases. A qualified lymphatic therapist can change the trajectory of dealing with your lymphedema. According to LANA (Lymphology Association of North America) therapists need to have completed an accredited board exam after meeting training qualifications of at least 135 hours of training through a qualified school.

We often refer to our therapy sessions as massage, but this is not like a Swedish massage that you receive at a spa. This is why it is so important to go to a therapist that is trained as a certified lymphatic therapist.

There are more than one school that offers lymphatic training. If you go to the Lymphatic Education and Research website there is a list of schools that are approved by LANA. Interestingly, the only school that requires therapists to upgrade their skills to keep their LANA rating is the Vodder School.

A good place to locate a lymphatic therapist is in the BCLA Directory. This directory lists off therapists and fitters that are members of the BCLA. When they are listed you know that they are qualified and also, they are members of either the College of Physiotherapy or Massage Therapists in BC. The directory is updated yearly and BCLA members receive a copy of the updated directory as part of their membership. You can also access the directory at bclymph.org and it also contains listings for fitters for every health region in BC.

If there are no therapists listed in the directory for your area, then check on the Vodder website https://vodderschool.com/contacts/search and see if you find a therapist there.

Once you have found a therapist then don’t be afraid to ask a couple of questions. “How many patients with lymphedema or lipedema have you treated? Are you keeping current on developments coming from new research on lymphatic disorders?”

Your first appointment doubles as a meet and exchanging information with your therapist. Your therapist will evaluate not only your lymphedema (may include measurements and photos), but will also discuss complete decongestive therapy. This includes diagnosis, manual lymphatic drainage (MLD), bandaging, compression garments, therapeutic exercises, and self-care. Self-care may include learning how to bandage at home, do self MLD as well as proper skin care and exercises to help improve your lymph flow.

An important component that your therapist will help with is education. Most doctors only receive 25 minutes in medical school on the lymphatic system. Your therapist can help educate you about your lymphatic disease.

To many of us our lymphatic therapist is a very important part in our team dealing with lymphedema and lipedema. They understand what we are going through and at times provide a sympathetic shoulder to cry on. Having a trained lymphatic therapist in your corner definitely helps.

Unfortunately, it isn’t cheap to see a therapist. If you have extended medical check your plan to see what coverage you have. If you don’t have extended benefits make sure you save your receipts to include in your income tax the same way you save your garment receipts.

Your therapist will help you plan out your lymphatic journey by helping you set goals and updating those to show your progress. It may be the encouragement that you need in your lymphatic journey.

Something I have found handy is consider seeing a lymphatic therapist when you are on holidays in a different location. It gives you different insight into your condition.

Usually, Emil Vodder is given credit for creating Manual Lymph Drainage in the 1930s. But it didn’t start then. The start of MLD dates back to the 1870s to Dr. Andrew Taylor Stills, a doctor practicing in the US.

Stills had a good knowledge of anatomy, and his hypothesis of the connection into the brain of lymphatic system was proven in 2015! He was indeed a forward thinker.

Stills in 1892 founded the American School of Osteopathy (ASO), now called the Kirksville College of Osteopathic Medicine of A. T. Stills University of Health Sciences in Missouri.

Stills was one of the first, if not the first who recognized the importance of the lymphatic system. One of his graduates, Elmer D. Barber published his first book on osteopathic medicine, Osteopathy Complete, in 1898. It contained one of the first descriptions of MLD.

With research ongoing, including the impact of MLD on the spleen, the lymphatics were discussed and then debated if the spleen was part of the lymphatic system.

In the 1903s, a Danish massage practitioner working in France was also looking into the lymphatic system. This is a name which is still very familiar - Dr. Emil Vodder, PHD. It started with a patient with chronic sinusitis and acne. Vodder decided to try to drain the stagnant areas toward the neck. He realized that he was working on the lymphatic pathways.

In 1936, Vodder presented about MLD in Paris; but Vodder was not a doctor, physio therapist or a registered massage therapist and his work was met with skepticism.

In under a hundred years, Vodder has become a household name for his MLD training. Many of the therapists working in BC were trained in the Vodder method.

MLD started out from stuffed up sinuses. It is now used for relief of several diseases including lymphedema, lipedema fibromyalgia, multiple sclerosis and Parkinson's disease.

In 1986 I visited my doctor for my annual physical, confident that there would be no problems. I left feeling anything but confident, with my doctor finding a lump in my left breast. That led to an appointment with a surgeon, a biopsy and the resultant news that I had breast cancer. The next step was surgery to remove my whole breast (in1986 lumpectomies were not discussed) - not a very happy Christmas that year! But things looked up when I heard that the cancer had not spread and it wasn’t even necessary to have radiation or chemotherapy. 

And that was that, until about 17 years ago, more than 20 years after my surgery, I was in an exercise class doing the step on step off footwork when my foot slipped, I fell backwards and tried to save myself by using both hands. Off to Emergency when they said I had fractured both wrists and I ended up with both arms in casts for three weeks. Thank goodness I have a caring husband otherwise I wouldn’t have been able to cope. Think about it: no hands, can’t do anything!! 

When the casts came off, I went for physiotherapy. No one could understand why my left arm and hand were swollen whereas my right was fine. The first place I went was useless so I tried somewhere else and really lucked out with the physiotherapist who knew right away that the problem was lymphedema. The fracture had triggered lymphedema, which I had never heard about and was completely ignorant of this condition. He recommended Cedar Hills Lymphatic and Massage Therapy. Rang them and made an appointment for four, I think, weeks of MLD. Since then, I have had MLD treatment every six to eight weeks. I was also fitted for a day garment which I find very restrictive and confess that I don’t wear it too often. But every night I wear a night garment, my preferred one being JoviPak. I find this garment, although bulky, very comfortable, and it helps enormously with my hand and arm looking nearly “normal” every morning. During the day my left hand and arm swell up again and are noticeably bigger than my right but my lymphedema is not too bad and I feel I can cope with just the night garment unless I’m travelling. I also use moisturizer twice a day as my skin gets very dry. 

I wish to thank the caring volunteers at the B.C. Lymphedema Association for the wonderful help they gave me at the beginning of my lymphedema journey, giving me useful information and encouragement, and continue to help to this day.

Life with a lymphatic disease isn’t fun. Your body has morphed, changed shape and added extra problems. Balance issues, brain fog, lack of energy all factor in.

You feel ugly; you beat yourself up over developing this incurable condition. Life becomes complicated. You play the “what if” game — what if I hadn’t done this. Weight becomes a weapon used against you. If you are overweight, you get told it led to your condition. Fat shaming is too common. Everything weighs on you.

Depression is very common for folks dealing with these diseases. You look down a long hall way and there is no light at the end. It can consume you, leading to deciding you don’t need to use compression or get therapy. You shut down, letting the lymphatic condition overwhelm you.

Some people stop leaving their homes and walk away from friends feeling they won’t understand what you are dealing with. Life shatters.

Ok - let’s take a break and a few deep breaths. Then remember YOU DID NOTHING WRONG! You did not cause the cancer that led to the surgery that started this disease. You did not cause your Lipedema or Primary Lymphedema. I know, it is easier to say that then it is to stop beating yourself up. If it is a game, I think we all play — if I hadn’t flown my lymphedema wouldn’t have started. If I had listened closer to the doctors before the surgery, this wouldn’t have happened. 

Some of the techniques used to fight cancer work well for dealing with Lymphedema. Deep breathing, imaging and affirmations all help with lymphatic diseases. Diet changes, exercise changes all fit into our toolbox for dealing with our day to day lives.

Years ago, I heard what you dwell on grows stronger. Ok, some days beating up a pillow or having a good cry help. But if you are beating yourself up all the time it isn’t going to help you in the long run.

If you are feeling helpless and depressed, please talk to your doctor. They can help. Our bodies and mind are interconnected. Asking for help for depression is the same as asking for help for diabetes. Sometimes the world seems out of whack and it is hard to find the right balance without reaching out for help.

Make sure you give yourself time every day to breathe and relax. Do some exercise that you enjoy. For some, it is at the pool, for others it is going for a walk or bouncing on a rebounder. The exercise itself isn’t as important as the impact it has on your mental health.

My escape is on an electric trike. I go from an old lady dealing with swelling in my noggin and the areas (a lady never tells exactly where she swells) to feeling like a kid again. I can’t balance a bike but I can definitely pedal a trike. This is my second trike and some days it provides me sanity. I can hear the birds and the crickets when I ride my trike. Even a trip to the grocery store becomes an adventure. I keep smiling when I am pedalling along. 

The greatest gift you can give yourself is to look in the mirror and smile and say“I am good enough just the way I am.” Because you definitely are.

Willa Condy

Why bother caring for our skin? It is the biggest organ in our body.

Having a lymphatic disease increases the risk of getting cellulitis. Any crack in the skin can let bacteria in leading to the redness, pain and the fever of cellulitis. Once you have had cellulitis you are pretty well guaranteed to get it again.

Yes, your doctor will say cellulitis won’t kill you. But if you get a sepsis infection it might lead that way.

How to protect your skin? Start a daily regime of skin care. A good time to lotion up is in the evening before bed. Make it part of your nightly routine.

What To Look For

You want to look for a pH of 4.5 to 5.5 in your lotions to help your skin’s acid mantle protect your skin. This barrier helps protect from bacteria that cause infections, including cellulitis.

We definitely want to keep that barrier up guarding our skin. Washing in the morning and evening works to keep your skin clean without damaging that important acid mantle barrier. Most of us wash starting on our feet and working upward. We need to start from the top and instead work down as the water washing down removes dirt, but leaves your barrier intact. Ditch the loofas and exfoliation gloves as they can scratch and damage the acid mantle barrier. Switch to a soft facecloth. Avoid scorching hot baths and showers as they pull more blood into the area that can make your lymphedema worse. 

Look for moisturizer that contains urea which is a good hydrator. Be prepared that you may have to switch lotions as our skin can be more sensitive. What works for us one month may irritate the next. Cetaphil is a gentle lotion and also has a gentle cleanser that works well. As a bonus the Cetaphil line is actually Canadian. Here are some of the lotions recommended on the Canadian Lymphedema Framework by Canadian dermatologist, Dr. Catherine McCuaig – for maintaining good skin care for those with lymphedema: Vaseline, Aquaphor Ointment, Glycerin 10%, Aquaphor 40%, H20 50%, Glaxal base, CeraVe, Vaseline, Creamy Lipikar Baume AP, Trixera, A-Derma Exomega, Restoraderm (Cetaphil), spectroeczema care, Cutibase, Cetraben and any oil, preferably not perfumed.

Precautions to take

Wear gloves when washing dishes to keep hands safe. Make sure you have decent hand protection for putting things in and out of your oven while you are cooking. Burns are not something you want. Again, make sure you have an antibiotic salve at home in case you do get burned.

If you have leg Lymphedema or Lipedema make sure to check your feet for cracks and moisturize between your toes.

Lower leg Lymphedema can unfortunately lead to leaky skin called lymphorrhea, a leaking of lymphatic fluid through the damaged skin where the caustic fluid can burn and damage the skin. The blisters created by lymphorrhea need to be drained. This is when you should have your medical professional refer you to wound care for proper treatment.

Just as we don’t want our skin to be too dry, we also don’t want it to be too moist. Too moist skin is at risk for fungal infections. Be careful if you have skin folds including the groin, under breast and between the toes. If your skin goes red be careful. The irritation in your skin can turn into a rash, followed by an open wound. 

There is a product that works well in keeping skin folds dry. It is called “Interdry” and is sold on a roll or on sheets. You want a piece that is large enough that when it is placed in the skin fold it protrudes a couple of inches  beyond that. You remove it when bathing and then put the piece back in place and can be used a few times until it becomes dirty and should be replaced. 

Summer Brings Challenges

Sunscreen is essential to protect skin from sunburns. Get in the habit of putting on sunscreen before heading out to start your day. Leave some time after applying before putting on compression garments. You can get sunburned through your compression garment. 

If you are hesitant to use sunscreen, consider wearing UPF clothing. It protects your skin and you don’t have to worry about reapplying sunscreen part way through the day. There are many companies that make UPF clothing now. “Nozone,” is a Canadian company that sells UPF clothing; other brands include “UnderArmour,” “Patagonia” and “Coolibar” to name a few.

Many love gardening. Add gardening gloves and a good hat before you venture out in the yard. Protect yourself from thorns and buggies that you find out in the garden. Make sure you go out before the heat of the day in summer as the heat causes swelling.

In summer many of us love to hit the beach. If you have leg lymphedema or lipedema then you can still enjoy your beach adventure just with a few changes. Consider water shoes to keep your feet protected from the sand but also any barnacles or sharp rocks you may encounter. If you want you can use an old compression garment but that is up to you. Water works like compression garments so if you are in the water you can enjoy without garments.

Mosquitoes and other biting insects are not fun. Remember to apply your insect repellant before heading outside. I like the insect repellent towelettes for the ease of using it. Another option is insect repellent clothing. You can get hats, shirts and pants that will repel the little critters without adding to the chemical load on your skin. Trust me you can get a mosquito bite through compression garments. Marks sells a selection of insect repelling clothing, as does The Original Bug Shirt Company and Insect Shield. 

Cuts and scrapes aren’t fun. Tend to them with an antibiotic cream or lotion as soon as possible. Having a lymphatic disease impacts our immune system and makes us vulnerable to infections. If you do have an injury keep an eye on it. If it starts to show signs of infection go see your doctor immediately for antibiotics. Do not wait. 

Manicures and Pedicures Safely

I know some people love getting manicures and pedicures. Those can come with some risk if the instruments aren’t properly sterilized. You could try pampering yourself at home, but it might not feel the same. If you want to go to the salon, take your own tools with you. Make sure that the manicurist does not cut your cuticles.  

Protect the skin you are in and it will protect you in return.

Sonja’s Redden is a 16 year member of the BCLA and is the owner of Healing Rivers Physiotherapy in Prince George, BC

What made you join the BCLA? What value has it brought to your practice in the last 16 years?

I joined the BCLA for two reasons. 

1. I wanted to give my support to the BCLA. It is the BCLA’s mandate to help people with lymphedema access appropriate care and to raise awareness about the disease. When I first started my lymphedema therapy practice in 2006 there was very little knowledge about lymphedema in the general population as well as in the medical community. Many of my patients told me how frustrated they were with the medical system before they found my practice, because nobody could help them with their lymphedema. When I heard about the BCLA I wanted to become a member to be part of a stronger voice that advocates for people with lymphedema. 

2. I wanted to part of a community of people and therapists that would help me be informed about relevant issues in all things lymphedema in BC. Working in Prince George, I felt a bit isolated at times as I didn’t know anyone else working in this field in the Northern Health Region. My membership with the BCLA helped me feel connected and part of a network.

What changes have you seen in the last 16 years for dealing with lymphatic disorders?

I feel that we are in a much better spot now in lymphedema awareness in the medical community and even the general population. There is generally an increased interest in learning about lymphedema; there have been several lymphedema education events throughout BC in the past years and I feel people living with lymphedema are starting to experience more support from medical professions. 

Having said this, we are nowhere near where we should be in BC when it comes to making best practice lymphedema care available and accessible for all people who need it. We still have a long way to go in regard to education, funding, and implementing appropriate care models especially for people with more complex lymphedema. 

What therapies have you found help for lymphatic disorders that you use at your clinic?

I use all components of Combined Decongestive Therapy in my clinic, compression for volume reduction and maintenance, exercise, education, and manual lymphatic drainage. I also use lymphatic taping and a deep oscillation therapy device in combination with manual lymphatic drainage. 

The lymphedema treatment that I use most often in my practice is usually a combination of compression therapy, education, and lymphatic exercises. Depending on the patient’s presentation and tolerances, they may also benefit from other treatment components.

I know you have been involved in the Spirit of the North Lymphedema garment fund since fundraising started. What is the criteria for someone applying for a garment?

We are so grateful that we have the lymphedema fund. This fund was created for people with lymphedema and chronic edema who live in the Northern Health Region, who cannot afford to pay for compression out of pocket. 

The funding provided by the Spirit of the North Healthcare Foundation is supported by donors. This requires all other funding sources available to the patient, e.g., extended health, Ministry, Veteran’s Affairs, etc., to be exhausted before making a funding request to the Spirit of the North Healthcare Foundation through their certified lymphedema therapist or certified lymphedema garment fitter.

Have you seen an impact for those dealing with lymphedema being able to access this important fund?

Yes, I have seen it benefit a) seniors on low fixed incomes; b) people who are still in the working force with complex health needs whose extended medical insurance will reimburse them for only a fraction of the compression that is needed per year; and c) people on long-term disability. 

Without the ability to access the lymphedema fund, they would not have been able to afford compression. Access to the fund has given them peace of mind that they can take care of their chronic condition without having to worry about where the money comes from. I in turn have seen that their lymphedema have been well managed without complications for a couple of years now.

Would you recommend a garment fund in other areas of the province?

Absolutely. I have no reason to believe that the need for funding for lymphedema compression is different in other regions of the province. 

Supporting your local or regional Health Care Foundation in implementing a lymphedema fund and volunteering in fundraising activities to help sustain it, will provide essential health care for people with lymphedema, it helps to improve the health of your communities, and it brings people together in community. 

What is the link if someone wants to donate to the fund?

You can go to the Spirit of the North Healthcare Foundation website, https://spiritofthenorth.ca, and find the ‘Donate’ page. Then scroll down and select ‘Lymphedema Fund’ from a drop down menu. 

Lipedema Awareness Month 

A Canadian's Journey and the Urgent Need for Advocacy

by Colleen O’Farrell

June marks Lipedema Awareness Month, a time dedicated to raising awareness about this chronic, painful, and often misunderstood condition.  

For many, myself included, it's a month brimming with a mixture of hope and frustration — hope for increased understanding and recognition, and frustration born from the continued lack of readily available diagnosis, treatment, and support in Canada.  

My journey, marked by three surgeries in Germany, highlights the stark contrast between the medical landscape there and the frustrating reality faced by numerous Canadian lipedema sufferers.

Lipedema, often misdiagnosed as obesity or lymphedema, is a chronic disorder characterized by excessive fat deposits predominantly in the legs and arms, accompanied by debilitating pain, easy bruising, and a range of other symptoms.  The fat distribution is disproportionate, often leaving the feet and hands relatively unaffected, a key distinguishing feature from obesity.  The pain isn't just aesthetic; it's relentless, ranging from a dull ache to sharp, stabbing sensations, often worsened by standing or walking.  This constant pain significantly impacts mobility, activities of daily living, and overall quality of life.

My own journey began years ago with the familiar cycle of weight fluctuations, persistent swelling, and increasingly intense pain.  Doctors in Canada offered weight loss advice, dismissing my concerns despite my repeated explanations of the specific symptoms.  This dismissal, unfortunately, is a common experience shared by countless lipedema patients. The lack of understanding and the systemic misdiagnosis led to years of suffering, self-blame, and emotional turmoil.  The constant feeling of being misunderstood and unheard is profoundly isolating, adding another layer of complexity to an already challenging condition.

The turning point in my journey came with the discovery of lipedema and subsequently seeking treatment abroad.  After extensive research, I traveled to Germany, a country significantly more advanced in its understanding and treatment of lipedema.  There, highly skilled specialists, familiar with the nuances of lipedema's presentation, could finally offer a diagnosis and a path toward improvement.   My treatment has involved three surgical procedures, utilizing techniques designed to remove the excess fat and address the underlying structural abnormalities associated with lipedema. This was coupled with consistent physiotherapy and lymphatic drainage massage, further enhancing my recovery. As I still have 1 or 2 more surgeries to go, it is a long and expensive journey to recovery and health. 

The surgical interventions, though effective, marked only a portion of the path towards better symptom management.  The surgeries helped to reduce the excess volume and pain, leading to improved mobility.  The importance of ongoing physiotherapy and self-care is paramount for long-term relief and preventing further progression. This reality continues to highlight a deficiency in Canada's healthcare capacity.

The difference between the German and Canadian healthcare systems, in terms of lipedema treatment, was profoundly striking.  Germany had specialists trained to recognize and treat lipedema, accessible healthcare that would schedule and provide ongoing support and resources in managing this condition. In contrast, my experience in Canada underscored a critical lack of awareness and specialized expertise.  Many healthcare professionals remain unfamiliar with lipedema, leading to misdiagnosis, delayed treatment, and substantial emotional distress for patients.

The need for increased advocacy in Canada is paramount.  Raising awareness among healthcare professionals is a crucial first step.  This requires comprehensive educational programs, including seminars and workshops, targeting physicians, physiotherapists, and other relevant medical personnel.  These programs must focus on the clinical presentation of lipedema, differentiating it from obesity and lymphedema, and outlining appropriate diagnostic methods and treatment strategies. Moreover, they should highlight the importance of early intervention to prevent the worsening of symptoms and enhance treatment efficacy.

In addition to educating healthcare professionals, we also need to improve public awareness of lipedema. This is essential to reducing the stigma surrounding the condition and empowering patients to seek help earlier.  This increased recognition can help ensure that patients receive prompt referrals to specialized centres and receive the appropriate treatment that they need.  Public awareness campaigns, targeted public media, and collaboration with patient advocacy groups are essential for widespread awareness.

Further advocating for improved access to comprehensive care is crucial.  Many patients face significant financial burden to cover additional treatment procedures or medical specialists, especially when those medical professionals are more readily available in other regions or countries.  Insurance coverage and government funding for lipedema treatment needs urgent attention.  The development of dedicated lipedema clinics across Canada, staffed by expert practitioners, would greatly alleviate the currently challenging situation for individuals seeking support.

Finally, creating strong support networks for lipedema patients in Canada is essential for effective self-management. These support networks provide crucial platforms for communication where individuals can learn, share stories, ask questions, and participate in peer support groups.  These groups provide invaluable emotional aid, and encourage collective action — essential elements in a patient's path towards empowerment and advocacy.

My personal experience and the gap between healthcare systems highlight the critical need for a concerted advocacy effort.  Lipedema Awareness Month shouldn't be merely a month of raising awareness; it should be a catalyst for immediate and sustained action to achieve recognition for lipedema, and create readily available and supportive resources for patients in Canada.  Working collaboratively with healthcare providers, government bodies, patient advocacy groups, and individual sufferers, are vital to finally deliver access to diagnosis, effective treatments, and the crucial support system that Canadian lipedema patients deserve.  Together, we can bridge this healthcare gap and ensure that no one else feels as isolated and unsupported as I once did.

Carol Armstrong’s Journey in Lymphedema Care

You could compare Carol Armstrong RMT to a one stop shop for help with lymphatic diseases such as lipedema and lymphedema.

Armstrong, a 16-year member of the BCLA saw a need and has worked to help patients dealing with lymphatic diseases.

“I took my initial MLD/CDT training with the Vodder School in 1993. Coming from a deep tissue massage background, I was surprised how effective this light technique could actually be beneficial.” said Armstrong. Years later ICG scans showed the impact that this technique makes to patients dealing with Lymphedema.

Armstrong kept adding tools to her toolbox, including other fascial techniques to help with scar tissue, fibrosis and muscle imbalances. 

Her journey took her to Germany and Italy for training on fitting compression garments.

In 2009 she joined the BCLA to support us in advocating and educating for lymphedema awareness. 

From 2011 to 2021, she gave public information sessions, starting with the YM/YWCA Encore program, InspireHealth, Wound and Foot Care Nurses, and eventually local Plastic Surgeons and Radiation Oncologists. 

In 2021, Armstrong joined the BCLA Advocacy Committee and the BCLA Medical Advisory Group, finding Chairperson, Christine Chandler an inspiration.

Armstrong has seen some progress over the years.

“In the past 15 years since collaborating with the Breast Health Navigators (BHN) in Victoria, my practice focus has been able to shift from only helping patients manage advanced lymphedema to a focus on screening, education about risk reduction, and prophylactic use of compression garments,” said Armstrong. Early intervention keeps the progress of lymphedema in check and keeps it from progressing.

“This was a pivotal shift in my practice, from viewing lymphedema as inevitable and progressive in its impact, to one where empowering patients to take early intervention steps could reduce their symptom burden. In the same way we screen and implement lifestyle measures for pre-diabetes, this could be done for those at risk of developing lymphedema,” said Armstrong.

With information increasing online, she has noticed that many patients who come to her clinic are better informed about lymphedema. But every patient requires individual treatment.

“I have learned that different things work for different people in managing their lymphedema. Experiment with what works for your situation, and connect with a support group to share ideas, hope and laughter,” said Armstrong.

Armstrong has one last piece of advice for all of us - “I encourage more BC residents to speak up and reach out to their MLAs, their Health Authority, their Physicians, and BC Cancer to continue to raise awareness and demand equitable care for those living with lymphatic diseases.