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.

Julian's Story

I was diagnosed with Lymphedema when I was 10 years old and had to run around to a bunch of different doctors. None who really knew how to treat or diagnose my condition. BC has come a long way, but there is still a ways to go. The province now offers specialized surgeries for people with Lymphedema, and has much better diagnosis and maintenance, and a lot of that is due to the hard work and advocacy of the BC Lymphedema association. Gaps still remain in care and we can do better for those who need help.

Early intervention and proper care prevent serious health conditions from developing down the line that are even more costly to both patients' and the province's chequebook. Lymphedema has no cure and the longer you go without intervention the worse it becomes.

In the same way we see big businesses making short term decisions to cut costs that in turn lead to more long term costs, the same is true with the province and what they cover for people with medical needs.

One area we can do better is for Lymphedema patients who need compression garments. No doctor out there who would say it is acceptable for someone living with Lymphedema to go without wearing a compression garment in their daily life. Despite that the province doesn’t cover that cost. Yes, if you are very low income and develop lymphedema after breast cancer you can get some coverage. 

Compression garments are non-negotiable for people with Lymphedema. Surely the province must have some incredibly compelling reason to avoid paying the cost of those garments right? Maybe compression garments are astronomically expensive? Nope. Garments are a few hundred dollars each. Not cheap, especially when you’re paying for them as an individual, but far lower than you would expect for the province to not cover a necessary medical expense. The yearly cost for compression garments to patients is right in line with the cost of Insulin for a year. Canada.ca puts the cost of Insulin “in the range of $900-$1,700 per year," and those costs would cover 3-6 compression garments for anyone with Lymphedema, which is enough to cover the vast majority of patients a whole year. 

One concern for the BCLA is making sure that everyone has access to the same level of treatment that those of us in the lower mainland have. That includes a wish list for Lymphedema clinics and doctors that can service the rest of the province.Also making sure everyone has access to qualified professionals who can do Manual Lymphatic Drainage to help manage their Lymphedema. 

And lastly our goals include making sure everyone has the education and knowledge they need to treat their condition effectively. That’s why we're here talking to you today, maybe you know someone who is affected by Lymphedema or maybe you had cancer surgery and weren't even aware you were at risk for Lymphedema. No matter who you are, the BCLA is committed to expanding care and finding solutions for those underserved, and we’d love all the help we can get. If you’d like to find out more about the condition or our cause, become a member, or donate so we can help advance treatment, you can find us at bclymph.org

Thank you,

Julian Del Balso

Julian is currently a Director for the BCLA and has dealt with primary Lymphedema since he was a child.

Right Fit Clinic - Massage Therapy & Medical Supply

If you live in Victoria and have Lymphedema you may have heard of Right Fit Clinic. Since 2020, Right Fit Clinic has been serving the Westshore Victoria region. 

Treating Lymphedema is easier when you have a team to help you. That is the philosophy that Jenna LaFleche, RMT, believes and it is reflected in this clinic.  

Services include CDT/MLD, acupuncture, compression garments fitting, pneumatic pump therapy (with and without compression bandaging). Also Pneumatic pump therapy with clinical exercise physiology. A clinical exercise physiologist (CEP) is specifically trained to coach exercise to “at risk” and chronically ill populations. 

Add in a registered Kinesiology, foot care nursing, diabetic and lymphedema footwear and breast prosthesis fitting to make this a “one shop stop” for people dealing with Lymphedema. 

Many times, dealing with the diagnosis and living with lymphedema can lead to a loss of self- esteem and to depression. Having someone to talk to can help deal with those feelings. 

RFC realized that this was an important puzzle piece that was needed for their lymphedema patients.  

Megan Phillion-Holmes, a Certified Canadian Counsellor (CCC and will soon be an RCC) has joined the team and is available to help those dealing with their issues. 

Interestingly RFC is also partnered up with Stem Cell Harvesting and Cell Banking. This is a growing field that in the future may in 10 - 20 years lead to being able to repair faulty systems including lymph nodes. 

LaFleche’s training began in 2009 while studying abroad in Munich, Germany at theStaatliche Berufsfachschule für Massage am Klinikum Großhadern. She did not rest on her laurels, continuing her education. In 2021, LaFleche joined the BCLA board and has continued to be a valuable asset, sharing her medical knowledge and donating her time.  

LaFleche firmly believes giving tools to her patients enable them to understand and cope with lymphedema. 

“Providing patients with the resources to learn self-management tools, and by providing a safe, non-judgmental space for relaxation and healing is of utmost importance,” said LeFleche. 

The Right Fit Clinic definitely is the right fit if you are dealing with lymphatic issues in Victoria. 

By Lyn Anglin 

The PG Lymphedema Workshop November 23 was excellent. 

Presentations by Jenna LaFleche RMT, CDT/MLD and Sonja Redden (PT, CDT/MLD) on how to assess of edema and lymphedema. They explained what tools are needed to be able to get the health history, assessment and baseline measurements needed for cancer and non cancer related lymphedema.  

The importance of collaboration between health care teams was also emphasized. 

Terri Huppie, Medi Canada representative showed the CircAid reduction kit on two patients. 

Another workshop was on bandaging using Essity bandages for all participants. 

One question that all presenters agreed that before and after limb measurements would be ideal for any patients undergoing (cancer treatments).

By Lyn Anglin 

BCLA had Sandi McConnach, BCLA President and Vice President Lyn Anglin attending Prince George HCP’s Lymphedema Education Day on November 22 plus Lymphedema Workshop on November 23. 

Jenna LaFleche,MLD, Director for the BCLA, presented at both events. 

Prince George Health Care Professionals (HCP) Lymphedema Education Day – Nov 22, 2024  

Over 65 people attended in person and more virtually, to learn from Dr. Keast (an expert in lymphedema and wound care, and co-founder of the Canadian Lymphedema Framework), 2 certified lymphedema therapists (Sonja Redden, PT and Jenna LaFleche, RMT) and 3 patients. It was an amazing and positive day, with everyone in the room keen to learn more about lymphedema and share information.  

Dr. Keast presented on 5 Different Topics 

Dr. Keast shared a wealth of knowledge in 5 separate presentations:  

• Lymphedema – an under-recognized & under treated condition  

• Current Best Practices Treatment  

• Challenges of Lymphedema Care in the Medical Practice  

• Cellulitis in Lymphedema  

• Wounds in Lymphedema  

He shared an updated Lymphedema Canada prevalence chart (estimated 1.25 million for 41.5 million population). This chart is included in the winter issue of Pathways magazine. The Case studies he showed included the challenges in treating patients due to the multiple comorbidities of the patients. Interestingly hip and knee surgery patients are at high risk of getting lymphedema.  

In Best Practices, he focused on: Meticulous skin care (goal is to maintain or repair the barrier function), Exercise to mobilize fluid and manual therapy combined with compression. 

He explained that MLD mobilizes fluid. Without compression, it will just flow back into where it was moved from. He explained that compression works because it reduces the circumference of the limb and enhances muscle contraction forces so that the lymph vessels work better.  

The Importance of Patient Care  

Patient-centered care was emphasized many times.  “The best compression for a patient is the one that they will use.”  For HCPs to come up with a plan for a patient, it is important to take a history, understand the cause of the lymphedema and understand if the patient has support at home.  

He pointed out patients should be encouraged to exercise. Weight loss, good nutrition, self-management strategies and skin care were discussed. Dr. Keast stated care for Lymphedema should include: Prevention, Assessment, Treatment, Long-term management, Self-management. Team care is important!  

Cellulitis Diagnosis Can be Difficult  

Dr. Keast noted that HCPs are challenged to diagnose cellulitis and when to admit patients to hospital because cellulitis can be confused with up to 16 other conditions. He gave some tips on what helped and mentioned that cellulitis is usually unilateral, and if antibiotics don’t make a difference in treatment, then it is not cellulitis.  

Wound Care 

In his final presentation of the day, Dr. Keast explained the stages of a skin wounds. Chronic wounds and the challenge in treating is they are not a separate disease but rather a complication of a disease. Care is focussed on diseases, not always aligned with what needs to be done in the wound management cycle.  

If compression is not available, you may be stopping the healing and we are seeing this in the hospitals. Dr. Keast noted that the only contraindication for compression is if the patient has Peripheral Arterial Disease and this is identified through the ankle-brachial test. 

Therapists presentation pointed out Challenges in Patient Care  

Jenna LaFleche (RMT, CDT/MLD) and Sonja Redden (PT, CDT/MLD) both shared case studies showing examples of challenges in determining plan of care for different patients. LaFleche showed an example of a patient, who through exercise, helped regain his lymphatic function. Redden shared how tubular compression used for wound care can cause delays in wound healing. She showed how with proper use of compression the wound could heal. One patient with severe swelling in her truncal area helped reduce the swelling through diaphragmatic breathing and chest breathing.  

Three patients shared their stories and experiences with cellulitis, difficulty finding shoes and how the therapists helped them.  

Note: The Lymphedema Education Day was organized by Dr. Dick Raymond, Dr. Khalid Bashir, Dr. Brian Hillhouse, Natalie Allan (patient), Sonja Redden (PT, MLD/CDT therapist), Lila Reynolds (patient), Jayleen Emery, Santaya Garnot, Diane Sarmiento, with funding support from: Prince George RCME Community Funds, Rural Coordination Centre of BC, Spirit of the North Healthcare foundation, BC Lymphedema Association, Northern Health. 

A woman in Nova Scotia is now planning her medically assisted death. She has Lymphedema and feels closed in. She has spent $60,000 to go to Japan for surgery, which helped, but it was not a cure. She would like to go for a second surgery.  

The government wouldn’t recognize the need or reimburse her for what she paid out for her first surgery. She couldn’t afford a second surgery without help. No help was forthcoming to cover additional surgeries. She felt painted into a corner. 

I think all of us with Lymphedema or Lipedema worry about what is coming down the pike. Will a flare trigger a massive increase in volume? How to afford MLD? Or compression garments? 

It is a vicious cycle — garments that you need to keep functioning. MLD to help ease the pain and swelling. The hours spent daily looking after the condition. It swirls around and around. 

We need coverage including mobility aids as well as pumps, compression and nighttime garments as well as coverage for MLD.  

Even in the lymphatic community we have haves and have nots. With extended health insurance you can afford garments and massages. Without the additional coverage you struggle. Going to Europe or Japan for surgery is again a luxury many of us can’t afford. 

No one wants to choose death over life. Unless the pain is unending.  

I was listening to a discussion on public transit. The guest stated the government won’t pay attention to a small group.  

We have more members in our Facebook group and on Instagram. More voices for sure, but we need to have more members to get our message listened to.  

Stick around and renew your membership to the BCLA. Encourage people you know dealing with Lymphatic diseases to join.  

If we had 500 members it might influence the government to take our needs seriously. We definitely need help affording garments and treatment for our lymphatic diseases before we see another person deciding to choose MAID. No one should ever be painted into that corner. Having a lymphatic disease is not easy, especially if you develop it after a cancer fight that you think has ended. Then the swelling starts. It is scary and isolating. If you are struggling with depression, please reach out and get help. We have to look after our mental health as well as our physical self.