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  • 01 May 2024 12:48 PM | BCLA Admin Assistant (Administrator)

    During question and Answer period at the legislature on April 23, 2024, Shirley Bond MLA Prince George- Valemount raised lymphedema care in BC to the Honourable Adrian Dix Health Minister. 

    Check out the following transcript to stay up to date:

    Here is the draft transcript from the Hansard Blues:

    S. Bond: I am very grateful to hear that. I had a very powerful meeting with a number of people who just are inspiring with their resilience and their efforts to change this in British Columbia. So I'm very relieved, and I know they will be, to heart that the minister is considering that.

    I'd like to also speak on behalf of the Lymphedema Association. I had an unbelievable awareness session. Obviously, when you have lymphedema, compression garments and lymph drainage therapy can be very expensive. Costs run from $200 to $9,000. I think the minister may be aware that I did a two-minute statement on this in the Legislature after meeting with people who were unbelievably inspiring.

    I wanted to raise the issue that the Lymphedema Association had submitted an application to PharmaCare in June of 2021, and we're now in June 2024. I'm wondering if the minister could just give me and the members — and the people of British Columbia who have lymphedema — some sense of hope as to whether or not funding will be provided.

    Hon. A. Dix: As I understand it, we do cover lymphedema sleeves in B.C. I'll certainly engage with the group, as well as the member, about issues that they'd like to see resolved. Again, the member will know: look forward — and I'll ask, especially, our PharmaCare team, led by Mitch Moneo, to reach out and not to wait for their request on this issue. We will definitely follow up, and I'll follow up with the hon. member.

    S. Bond: Yes, and I think that there are a number of specific questions. I think if there would be a willingness, on the minister's part, to have staff reach out to talk about what the gaps are, because they have to be custom-made for people.

    I know that in Prince George, for example, one of the things…. Spirit of the North, and Spirit Day, the lymphedema group there in Prince George, actually has raised thousands of dollars to provide assistance to people for compression garments. That is something that we should actually be looking at provincially, to make sure that as many people as possible get the support that they need.

    As a result, we are looking forward to a meeting with the Minister of Health soon!

    Colleen O'Farrell

  • 01 May 2024 12:46 PM | BCLA Admin Assistant (Administrator)

    Step into the bustling city of St. Louis, Missouri, on April 20, 2024, and you'll find yourself amidst a transformative event hosted by the Fat Disorders Research Society (FDRS). Here, under the banner of understanding and advocacy, a diverse tapestry of individuals came together to share experiences, glean insights, and ignite change for those affected by fat disorders. As I reflect on the echoes of this remarkable gathering, I'm filled with gratitude for the enriching experiences, invaluable information, and inspiring moments that defined this journey.

    A Warm Embrace of Support and Understanding

    At the heart of the FDRS Conference was a palpable sense of solidarity and empathy, offering attendees a sanctuary to connect, share, and find solace in the shared journey. From patients bravely battling fat disorders to compassionate caregivers, dedicated healthcare professionals, and tireless researchers, each person found a welcoming space to weave their stories, unveil their challenges, and celebrate their triumphs.

    Advocacy Blooms into Action

    The conference wasn't merely a gathering; it was a platform for advocacy, a stage amplifying the voices of those affected by fat disorders. Here, we championed rights to proper diagnosis, treatment, and support, sparking conversations through enlightening talks, engaging panel discussions, and intimate classroom-style teachings. With a focus on disorders like Lipedema and Dercums Disease, attendees gained insights into cutting-edge research, innovative healthcare practices, and crucial policy initiatives aimed at illuminating the path toward a brighter future.

    Empowerment Through Education and Sharing

    Among the myriad highlights of the FDRS Conference was the wealth of knowledge generously shared by esteemed speakers and experts in the field. From groundbreaking research findings to practical strategies for managing fat disorders, each session left us armed with newfound understanding and emboldened to take charge of our health journey.

    Innovative Solutions Illuminate the Path Forward

    Innovations shone brightly at the conference, illuminating pathways toward improved diagnosis and treatment of fat disorders. From emerging therapies to holistic wellness practices and even specialized fashion solutions like boots designed for those battling Lipedema and lymphedema, attendees were exposed to a plethora of options to navigate the complexities of their conditions.

    My Personal Takeaways

    Among the treasures I uncovered at the conference was the rollout of half stages in the diagnosis of Lipedema by the esteemed Dr. Karen Herbst. Additionally, I discovered invaluable tips for selecting a lipedema surgeon and was delighted to stumble upon specialized fashion options tailored for individuals like me, bravely facing the challenges of fat disorders.

    A Community United for Change

    Above all, the FDRS Conference served as a powerful testament to the transformative power of community and collaboration. By uniting, sharing knowledge, and advocating for greater awareness and support, attendees reaffirmed their commitment to fostering positive change for individuals grappling with fat disorders.

    Looking Ahead: Embracing the Legacy

    As we bid farewell to the FDRS Conference 2024, its impact reverberates far beyond the confines of the venue. Armed with newfound knowledge, renewed inspiration, and strengthened connections, we return to our communities with a shared mission: to continue the fight for recognition, understanding, and unwavering support for individuals navigating the complexities of fat disorders.

    In the days, weeks, and months ahead, let us carry forward the spirit of the FDRS Conference, igniting progress, nurturing empathy, and tirelessly advocating for change. Together, hand in hand, we can build a world where individuals with fat disorders are not only seen and heard but embraced with compassion on their journey toward health and well-being.

    Colleen O'Farrell

  • 05 Apr 2024 10:43 AM | BCLA Admin Assistant (Administrator)

    As we delve into the heart of 2024, the world of lymphedema advocacy is buzzing with excitement as the Lymphedema Education Day, organized by the British Columbia Lymphedema Association (BCLA), takes center stage. This event serves as a beacon of knowledge, uniting patients, healthcare professionals, and advocates to share experiences, educate, and inspire. Today, we'll explore the highlights of Lymphedema Education Day 2024, with a special focus on the compelling patient stories that stole the spotlight.

    Understanding Lymphedema:

    Lymphedema is a chronic condition characterized by the accumulation of lymphatic fluid, leading to swelling in various parts of the body. This condition often results from damage to the lymphatic system, commonly occurring after cancer treatments involving surgery or radiation, though it can be present at birth.  Despite its prevalence, lymphedema remains underdiagnosed and misunderstood.

    The BCLA's Commitment to Education:

    Lymphedema Education Day is a testament to BCLA's unwavering commitment to raising awareness and providing a platform for education. The day began with expert-led seminars, covering topics ranging from the latest advancements in treatment to self-management strategies. However, the true heart of the event lies in the stories shared by those who have faced the challenges of lymphedema and lipedema head-on.

    Patient Stories That Touched Hearts:

    1.     Janine’s Journey: Janine, a lymphedema warrior, bravely shared her emotional journey of coming to terms with her diagnosis. From the initial shock to the empowering realization that she could still lead a fulfilling life, Janine's story resonated with many attendees. Her positivity and resilience inspired others to embrace their own journeys with newfound strength. Click here to hear Janine's Story.

    2.     Colleen’s Journey: Colleen, a lipedema patient, recounted her path from late diagnosis to overseas surgery.  Her tale of emotional fat shaming and misdiagnosis demonstrated the importance of a strong support system, perseverance, and the need for continued awareness in the medical community. Click Here to hear Colleen's story.

    The Ripple Effect:

    The impact of Lymphedema Education Day 2024 extends far beyond the conference walls. Patient stories like Janine’s and Colleen's serve as a catalyst for change, inspiring others to share their experiences and fostering a sense of community among those affected by lymphatic diseases.

  • 14 Jan 2024 10:38 AM | BCLA Admin Assistant (Administrator)

    Colleen O’Farrell Q&A on her Lipedema journey. Colleen is a Director for the BCLA in charge of memberships.

    How long have you been dealing with Lipedema?

    I was diagnosed 3 years ago at the age of 47, but have been dealing with the symptoms and consequences of the disease since puberty. 

    Lipedema is resistant to diet and exercise.  I watched helplessly as my body got bigger and bigger. It didn’t matter what I ate, nor how many diet and exercise programs I tried. Starvation, bootcamps, you name it, I tried it. 

    I have spent thousands and thousands of dollars trying to "fix" myself only to discover at 47 that it was all futile. Don’t get me wrong, living an active and healthy life style is vitally important especially when you have a lymphatic disease; but, the emotional toll of this disease is something that isn’t always discussed.

    The dysmorphia, the anxiety, being told continually by countless doctors that you need to move more and eat less, the constant stress of watching every bite you put in your body and counting every calorie only to find out that all of the effort was in vain because you really had no control over the situation.  

    How long did it take to get a diagnosis?

    I discovered that I had lipedema quite by accident. I knew my legs were getting heavier and more painful at the onset of perimenopause.

    I had heard of something called Manual Lymphatic Drainage (MLD) that I was told might help. So, I gave it a go like so many other modalities I have tried over the years. I had an amazing therapist, who didn’t think that I had lymphedema, but that I had something called lipedema.  She asked me to speak with my doctor.

    My GP was very open, interested and willing to do research about my condition. She agreed that I did have it. She didn’t know where to send me for a specialist diagnosis which was required to seek treatment. 

    After about a year of getting nowhere in Canada, I reached out to a Lipedema clinic in Germany and received my first of 3 diagnoses via a zoom meeting during COVID. 

    After which I ended up at a weight loss and lifestyle clinic in BC where I was initially offered bariatric surgery. After much discussion and lots of tests, it was determined that on paper I appeared as an athlete; however, my body did not physically represent that. I was determined to be grotesquely obese according to my BMI. Anyone that tells you that hearing those words isn’t emotionally scarring is lying.

    Finally, I was then sent to a specialist for my Canadian diagnosis which is needed to fill in medical forms for any medical coverage. His letter was completely useless to me, as he clearly stated he did not support surgery and I should just wear tight pants!

    By then I already had my German and US diagnoses and had traveled to Germany to undergo my first of 4 recommended surgeries to treat my condition.  I know I will not win this battle to have my treatments covered in Canada, but I hope to help change things for those dealing with this disease in the future. 

    What problems have you encountered with getting referrals for a doctor that understands Lipedema?

    There just isn’t  anyone willing to diagnose, treat and support those trying to fight the progression of Lipedema.  

    What made you decide to leave the province to obtain help for your Lipedema?

    Once I understood that I had a treatable condition and that it wasn’t all in my head, I joined every online forum, support group, facebook group etc. that I could find to educate myself and figure out what to do. I wasn’t willing to wait anymore. I had been dealing with this for over 30 years. Our current medical system is broken and I wasn’t willing to give up my future health and mobility to wait and see if it would be fixed.


    How many procedures have you had to improve your quality of life?

    So far, I have had two high volume lymph sparing liposuction procedures performed in Germany. I have had a total of over 13 litres of diseased tissue removed from my thighs so far. I have 2 more procedures to go on my calves and my arms. 

    How did you decide on the doctor that you chose?

    It was a combination of research on forums, online, chatting with those I found that also have this disease and factoring in the overall costs of the treatment and travel. 

    How long did the procedures take?

    Each surgery was performed within 2 hours. I was under anesthesia and spent 2 nights in hospital for the first and just 1 night in hospital for the second as my system handled the treatment much better the second time.  

    What was the follow up care required?

    I was required to stay in Germany for over 10 days. I received MLD every other day while there. I had to inject myself with blood thinners daily to prevent blood clots and walk immediately after surgery and hourly which both were required to help with blood flow and the drainage of the excess fluid they use during the surgery.

    It was also required that I drink 6+ litres of water every day (the amount of tissue they removed) to maintain my blood pressure and prevent fainting, wearing compression was also required. They even put me into my flat knit compression before I woke up from surgery. They were required 24/7 for 6 weeks post op.

    How long has it been since your last procedure was done?

    I had my first surgery in October of 2022 and my second in May, 2023.  

    How often do you have to see your doctor for follow-up?

    I haven’t seen my German doctor at all, but have followed up with my GP here in BC once a month. 

    What changed after your surgery as far as wearing your compression?

    I still wear my compression daily as I actually feel better in them. I am still swollen and they say the full results of the treatment will take up to a year to see. 

    I am just now starting to see the full results of my first surgery on the fronts of my thighs. And the backs of my thighs are still very swollen from the second treatment. It doesn’t hurt quite as much to put them on anymore! 

    What has changed as far as your activity level?

    Surgery has changed my walking gait. My hips and knees are still adjusting to the change, but I can tell it is for the better. The pain has decreased. I can walk and bike further and faster, lift more at the gym, swim further and get into deeper stretches and yoga poses as my body isn’t binding from the sheer bulk of my thighs.  

    Would you recommend others follow in your path?

    I think everyone needs to follow their own path. Do your own research and educate yourself on your options. If there had been an easier and cheaper option, I would have taken it. But this has been my journey and I don’t regret it. Would I like the government to cover this so I am not out of pocket for medical treatment that rightfully should be covered, you bet. But this is my life, my health and my future mobility that are/were at risk and those are priceless to me.  

    What message would you like to give to others dealing with Lipedema?

     Keep fighting. It is a journey. A long complicated and tough journey that has many twists and turns, but know you aren’t alone in the fight. You will have to do a lot of research, ask a lot of questions, talk to many doctors who will likely tell you it is in your head or they don’t know what to do for you. Just keep asking the questions. Don’t give up. You are worth it. Your future health and emotional wellbeing are worth the struggles now. 

    Costs that Colleen has paid out of pocket

    -Each surgery/hospital stay was $8500
    -MLD $600 (5 treatments)
    -Travel costs for myself and a traveling companion (required) $600
    0 (lay flat seat on trip home — really needed!) 
    -Accommodations for 2 weeks: $2500
    -Additional expenses (food, etc.) $1000
    -Total per surgery: $18600

Email Address:
Telephone:1-604-924-6282 Lower Mainland
1-866-991-2252 Toll Free
(Canada & USA)

Mailing Address Only:

BC Lymphedema Association
723 Donegal Place
North Vancouver, BC  V7N 2X6
(this is not a lymphedema clinic)

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