AQL EXPRESS MAY 2024 EN

The importance of adherence to therapy WHY Specialized Training

Ultimate Relief for Lipedema

Juzo Sensation is a medical compression garment specifically designed for managing lipedema.

• Micro Massage Technology

• High Rise Waistband

• Therapeutic Medical Compression

Reduces Pain Helps with Shape Improves Mobility

• Available in 3 styles

• Black or Beige

Capri Shorts Pantyhose

BY YOU and FOR YOU! THE

LAQ

Why is specialized lymphedema training a must?

"My mom already knows about lymphatic drainage. Can she take care of my lymphedema?"

Every time I hear this question, it sends a shiver down my spine. Let's be clear: not just anyone can act as a lymphedema therapist. This is just as important for private clinic services as it is for the public health network. For example, all CLSC nurses must have certified training in lymphatic therapy in order to apply multilayer bandages to lymphedema patients. Why is this necessary? Because lymphedema is a manifestation of a broken, damaged lymphatic system that no longer responds normally. Why again? Because trying to help without the necessary knowledge can harm and worsen the patient's condition.

Specialized lymphedema training courses are held to the highest standards and follow a rigorous curriculum. You'll know a properly trained specialist when he or she is certified by a school recognized by LANA (Lymphology Association of North America), such as Vodder, Casley-Smith, Klose, Foeldi, ILTWI, and others. Or simply consult the LAQ Lymphedema Guide. At present, too few professionals in the public sector have acquired the specialty of lymphatic therapy. And that's one of the reasons for the lack of access to decongestive therapy in the public health network.

If you're on your own to get the care you need – at your own expense – make informed decisions; ask questions; don't hesitate to pay the right price for safe, specialized treatment. And when in doubt, contact the LAQ to discuss your options. The LAQ works tirelessly to make healthcare decision-makers aware of the urgent needs of people diagnosed with lymphedema.

We're here for you today with our resources, and we're determined to secure professional services for you as part of Québec’s universal healthcare system.

Anne-Marie Joncas, President

HOSPITAL ADMINISTRATORS

Participate in the Lymphedema Hospital Staff Survey. This exercise will help the LAQ build a portrait of the needs of all hospital services currently in place.

Information: aql@infolympho.ca

Update from the Lymphedema Clinic:

The MUHC Lymphedema Clinic will continue to see patients on its normal schedule (3 days/week) until October 2024. After that, the currently allocated funds will be exhausted. MUHC administrators are working to find ways to fund the clinic's services beyond that date. Although no plan of action or timeline has been presented, the clinic and its patients remain hopeful and confident that the only specialized assessment service for complex cases will be maintained. The LAQ continues to mobilize to help end the uncertainty faced by patients.

SPECIAL CONTENT

MANAGING FIBROSIS

Juzo - LAQ Platinum Partner - has kindly sponsored this content

By Brandy Mckeown, OTR/L, CLT-LANA, CLWT

Lymphedema is the accumulation of protein-rich fluid in the tissues. As this protein rich fluid in the tissues become more concentrated, it can cause varying degrees of fibrosis (thickening of the tissues). The longer the lymphedema goes mismanaged the more fibrotic the tissues become. Excess diuretics (water pills) can also increase fibrosis. Diuretics pull some of the fluid from the tissues but leave the proteins behind thus causing increased fibrosis.

How do we manage and reduce fibrosis?

If you have not already had a full course of lymphedema treatment with Complete Decongestive Therapy (CDT), then your first step in reducing fibrosis is to find a certified therapist. After that, consider the following:

⊲ Talk with your physician to limit or eliminate diuretics. Some diuretics are necessary for controlling other medical issues, so be sure to discuss with your physician prior to decreasing or discontinuing.

⊲ Be sure to stay hydrated. Water naturally helps to flush this thick fluid out of our bodies.

⊲ Limit excessive salt intake to help reduce swelling. Salt holds onto excess fluid in the tissues and can cause an increase in swelling and fibrosis.

⊲ You do not need to limit protein, as this does not affect the protein in the tissues.

⊲ Elevate your arm or leg when sitting and in bed (for leg elevation in bed, place a comforter or pillow between your mattress and box spring at the very foot of your bed, creating an approximate 6-inch elevation. This way you can flip, flop and turn in bed, without having to reposition pillows all night).

⊲ Fibrotic tissue has a high tendency for significant skin changes, therefore be sure to use a proper pH balanced soap (such as Dove) and moisturizer (such as Lubriderm or Eucerin) to help prevent infections.

⊲ Wear your compression garments daily. I f your garments are older than six months, they likely need replacing. Flat knit compression garments help contain and reduce fibrosis formation much better than circular knit garments.

⊲ Nighttime garments with channelling and foam work well to soften and break up fibrosis.

⊲ Use a compression pump daily will help to soften fibrotic tissue. If you do not have a pump, be sure to complete self-manual lymphatic drainage daily. You also can “knead” the more fibrotic tissues to help soften them.

*Editor's note: Compression pumps are expensive devices that are not covered by RAMQ and can cause congestion problems in the tissues at the top of the limb affected by lymphedema. For example, they may extend lymphedema from the arm to the back or trunk, or worsen lymphedema from the leg to the pelvis. Talk to your doctor about replacing lymphatic self-massage with a pump. You can learn self-massage from your certified lymphedema therapist or from the LAQ.

Brandy Mckeown, CEO of the International Lymphedema and Wound Training Institute, is a Certified Lymphedema Therapist and Training Instructor. Recognized in the United States as an expert in the field of lymphedema, she shares her expertise with us by outlining how to manage and reduce fibrosis.

IN REAL ACTION

Want your professionals to learn about lymphedema?

Order them a Let's Talk

Lymphedema kit

Have you ever felt like your doctor, nurse, or athletic trainer is limited in what they can do for your lymphedema? Now you can easily help them find out more! The LAQ's free Let's Talk Lymphedema Kit is specifically designed to help professionals improve their knowledge. Order one, two, three or more kits and distribute them at your clinic, gym or next appointment.

You asked us why the LAQ doesn't ship the kit directly to your professional. It's simple: human contact ensures that the documentation will be consulted.

Order your free Let's Talk Lymphedema Kit: aql@infolympho.ca

Enter your name, mailing address and the number of kits you want. Please allow 5 business days for delivery. Together, it’s less of a burden.

Honour and Support

The Québec Breast Cancer Foundation's Lymphedema Support Centre will receive the National Bank Award - Innovation and Community Support in recognition of its exemplary contribution to the fight against breast cancer and its prevention. The award ceremony will take place on May 4, 2024, at the Québec Breast Cancer Foundation's Forum Santé des seins. An event not to be missed! Full details below.

See you at the Forum!

Find out more about lymphedema and risk reduction! Come visit us at the LAQ booth on Saturday, May 4, as part of the Québec Breast Cancer Foundation's Breast Health Forum. An event that offers information and hope!

In order, Georgina Cama, Prof. Robert Kilgour and Dr. Anna Towers, contributors to the Québec Breast Cancer Foundation Lymphedema Support Centre

NOTICE OF WANTED

Have you ever volunteered for lymphedema?

We want to hear from you!

Help a social worker and master's student complete her thesis on community involvement for people with lymphedema.

Requirements: You must have lymphedema and have volunteered for the LAQ or the lymphedema cause. For more information and to participate in the individual phone interview, please contact Valérie Pedneault at pedv01@uqo.ca or call the LAQ at 1 866 979-2463/514 979-2463.

On the research front

Why surgery is gentler for breast cancer and arm lymphedema

A team of oncology specialists at Karolinska Institutet reports that less extensive breast cancer surgery combined with less systematic axillary dissection may reduce both the risk and severity of arm lymphedema. Recent results from the SENOMAC trial, published in the New England Journal of Medicine, suggest that it may be better to leave most of the lymph nodes in the axilla in place, even if one or two are metastatic.

READ ALL

NEW FOR OUR ENGLISH-SPEAKING AUDIENCE!

Our website is now available in English! Full of information and advice, it’s an invaluable resource. You’ll find many essential tools to help you manage your lymphedema. And even tips to keep you motivated day after day!

VISIT

www.infolympho.ca/en

LAQ'S SERVICE IN THE SPOTLIGHT

Welcome to ProLymph 2.0

A more user-friendly format for sharing among professionals

The ProLymph community, exclusively for healthcare professionals, is moving to a more user-friendly platform. This PRIVATE group is now joined by a new service that's FREE FOR YOU. ProLymph 2.0 now gives you access to a team of lymphedema experts over the phone. Free of charge.

To join as a new ProLymph 2.0 professional member, or to make sure you follow the ProLymph 2.0 community on its new platform and take advantage of the phone service, simply register at aql@infolympho.ca with your full name, email address and exact Facebook username.

To be part of the PRIVATE ProLymph 2.0 group, you must:

• Be a healthcare professional

• Be a Facebook user

• Be a friend of the LAQ Facebook page: https://www.facebook.com/AQL.LAQ (click the Like/Follow button)

• Temporarily allow public access in your Facebook settings - while we add you to the ProLymph 2.0 private Facebook group.

You will receive your official invitation in 3 to 4 days.

You can reach us at any time by writing to aql@infolympho.ca or via the ProLymph page of the LAQ website.

To take advantage of ProLymph 2.0 for FREE, register today at aql@infolympho.ca

The ProLymph Team

Be part of the research!

Join today! There is an urgent need for data on LDs. The mission of the LE&RN Global Registry for Lymphatic Diseases is to establish the world's most comprehensive patient-centered registry to inspire ground-breaking research, expedite the development of treatment options, and establish a path leading to a cure for LDs.

Dance on your feet! Dance sitting down!

Dance to the music, even from the comfort of your chair! This dynamic exercise includes rhythmic, full-body movements and easy-to-follow choreography.

A Participaction capsule, our allyin movement!

LET’S DANCE!

YOUR NEXT LAQ HOSTED SUPPORT GROUP MEETING

Keep lymphedema under control

Your next online education and support group takes place on May 8, 2024, at 7 p.m.

KEEP CONTROL OF LYMPHEDEMA with Maude Jubinville, Certified Therapist - Recognize the signs of loss of control, take ownership of effective solutions, and know when it's time to seek help. Submit questions in advance to aql@infolympho.ca

ZOOM presentation in French. Bilingual Q&A. This free event, organized by the LAQ, will take place on WEDNESDAY, May 8 at 7 p.m. Free and MANDATORY registration by clicking here.

We look forward to seeing you!

This lymphedema event is made possible by the dedication of volunteer therapists and the Lymphedema Association of Québec. The LAQ's mission is to support people at risk and those affected by lymphedema, while raising awareness of lymphedema as a chronic disease among health professionals.

SPECIAL WEBINAR FOR HEALTHCARE PROFESSIONALS

PRESENTED BY JUZO

Juzo from head to toe

Online presentation May 16 at NOON.

Presentation on compression by Juzo with Brigitte Drouin, Territory Manager for compression manufacturer Juzo. – A presentation exclusive to healthcare p rofessionals involved in the treatment of lymphedema. Certified therapists, orthotists, nurses, physicians, physical therapists, occupational therapists, kinesiologists and massage therapists are welcome! Free and MANDATORY registration.

REGISTER HERE

NEW - LAQ EDUCATION AND SUPPORT GROUP IN GASPÉ

Meeting IN PERSON on 11 May 2024 at 10:30 a.m.

The very first meeting of the LAQ Côte-de-Gaspé education and support group. Co-hosted by Gabrielle Côté, a person living with lymphedema, and Chantal Leblanc, a certified lymphedema management therapist.

When: May 11, 2024 at 10:30 a.m. – Where: 189 rue Jacques Cartier, Gaspé

You have lymphedema or are at risk. You are a closed one helping. This group will introduce you to the ABCs of lymphedema and help you find the support you need.

For registration and information:

Chantal: 581-887-2784 – Gabrielle: 450-651-1504

Thank you dear donors !!!

A new fiscal year begins at LAQ. To give you a better idea of the impact of your donations, we're introducing a thermometer that will accompany us for the next 12 months. A concrete and motivating symbol for our generous donors!

THE POWER OF YOUR GIFTS

$10 donation = 50 people served by the LAQ helpline free of charge

$ 25 donation = 10 complete LAQ information kits sent to 10 patients or 10 healthcare professionals

$50 donation = 50 patients, doctors or nurses receive their copy of the LAQ Lymphedema Guide

$100 donation = 1 free manual therapy session paid by the LAQ to a senior living facility resident

$1,000 donation = LAQ scholarship awarded to a young healthcare professional for specialized lymphedema training

Want to give a little at a time, all year long? Become a monthly donor by offering the amount that works best for you. You'll automatically receive a tax receipt for donations of $10 or more. Thank you for supporting the LAQ.

THE STORE OF HOPE

Not sure how to measure your limb?

Drop by the Store of Hope to get a measuring tape, complete with photos and measuring instructions from lymphedema therapists.

It’s a go!

$180

Donate now!

Shop the Store and support your LAQ

FLASH

The LAQ Lymphedema Guide 2024 was updated in April. Consult it online!

Discover the Web Member Section!

Membership in the LAQ entitles you to exclusive benefits, including access to the Web Members Section where you'll find all your tools! As a member in good standing of the LAQ, you have received an email inviting you to explore your Web Member Section using a secret password. If you have lost this email or are having trouble logging in, please contact us at aql@infolympho.ca

FOR MEMBERS ONLY

• Web Members Section with all your tools

• Monthly newsletter L’info AQL

• Printed quarterly Pathways magazine

• Self-management booklet Learning to take charge

• Cellulitis Assistance Card

• Self-measurement guidelines for arms and legs

• L’info AQL Surgery edition

• VIP invitations for support education and groups. plus events

• Your tools are mailed to you AND accessible in your online Member Section

The annual dues for Regular Members are $42.

NOT YET A PROFESSIONAL OR CORPORATE MEMBER?

The LAQ offers exceptional visibility and tools to support your services. Learn more and join us today!

The Web Professional Member Section will open in the coming months. Keep posted!

WELCOME New Members

NEW CERTIFIED THERAPIST IN THE OUTAOUAIS REGION:

Christine Plamondon of Médisport Physio in Gatineau joins the Lymphedema Directory 2024

NEW CORPORATE MEMBER IN GASPÉSIE:

Welcome to Danielle Perrault, Hair and Breast Prosthetics offering Amoena compression bras in Hope Town

The following new regular members joined us in April 2024:

Jeannette Carrier

Dominique Dionne

Angèle Kamara

We welcome you and thank you for your support!

The Québec Lymphedema Association has been working tirelessly to advance the cause of lymphedema for the past 25 years.

We are proud to have 223 regular and professional members, 30 corporate members and 63 service points.

Thank you also to our loyal members who renew their membership year after year. You are our reason for being.

The Therapeutic Support Program

Help is only a phone call away! And IT'S FREE!

Do you have concerns about lymphedema?

Feeling lost in the maze of care?

Want to make sure your compression is adequate?

Wondering what to do about cellulitis?

The volunteer therapists of the LAQ Therapeutic Support Program will listen to you, give you advice or direct you to the appropriate resources.

Toll-free 24/7, 365 days a year. Therapists on call every week.

Leave a brief message (name, phone number, problem) on voicemail or send an email to aql@infolympho.ca

Response time 24 to 48 hours. Service available nationwide.

TIP OF THE MONTH

THE IMPORTANCE OF ADHERENCE TO THERAPY

Spring means renewal. It's the perfect time to make sure you're sticking with your lymphedema treatment. The more you comply with your compression and therapy, the better you'll feel!

⊲ Be active: take advantage of good weather to walk and exercise

⊲ Wear your compression garment regularly

⊲ Your compression garment is showing signs of fatigue: schedule an appointment with your orthotist to have it replaced.

⊲ Hydrate with taste: flavour the water in your flask or jug

⊲ Take care of your skin before going to bed

⊲ Practise self-massage during relaxation breaks

⊲ Maintain a positive attitude

⊲ Balance your skin care routine with your lifestyle.

Whether it's mastering self-bandaging or finding 15 minutes a day to exercise, even small adjustments can dramatically improve lymphedema management. Sometimes all it takes is a fresh start to restart a routine that's working for you!