LYMPHEDEMA AWARENESS DAY – MARCH 6
The Saskatchewan Lymphovenous Learning Association (SLLA) will observe Lymphedema Awareness Day on March 6, 2011. Lymphedema is a disease that is not curable and is not well understood. Patients are often confused and frustrated by the lack of readily available information and the cost of treatments.
Lymphedema (LE) is a swelling within the body due to accumulation of lymph, a colorless fluid which forms in the body naturally. Normally it drains back into the blood through a network of vessels and lymph nodes. If the drainage routes become blocked or damaged, lymph accumulates in the tissues and swelling occurs. LE leads to changes in the tissues and greatly increases the risk of fibrosis (an unhealthy hardening of the tissues) and infection.
LE is categorized as primary or secondary and can affect men, women, and children of any age. Primary LE patients are usually born with a fault within the lymphatic system itself. Secondary LE is the result of damage to the lymphatic system. This may be the result of surgeries, especially cancer surgery where lymph nodes are removed, radiation, infection, injury, burns, or other trauma.
LE is often poorly diagnosed. The condition is sometimes confused with obesity or simple skin infections. Some people are told that nothing can be done to help and many doctors are skeptical about treatment. LE can often be uncomfortable and although it cannot be cured, the major symptoms can be improved and controlled with appropriate treatment and self care. If left untreated the condition worsens.
LE treatment helps reduce swelling and decreases the chance of complications. The standard treatment is called Complex Decongestive Therapy (CDT). This includes skin care, a specific form of massage, special bandaging, exercises, and compression garments. If treatment is not started early, it can take longer to get LE under control and can decrease the effectiveness of long term results. The SLLA maintains a list of fully trained CDT Therapists in the province. Various physical therapy treatments services are available for garment fitting.
SLLA was born in 2004. This small organization of approximately 60 volunteers, including 9 executive members scattered across Saskatchewan, strives to provide advocacy for lymphedema patients, provide education to patients and the medical system, and secure improved health care and insurance coverage. This is a tall order for the small group. They need more members and more help. Yearly memberships cost $30.00 and include a very informative magazine published by the Lymphovenous Association of Ontario. It is easy to understand that SLLA needs a larger operating budget to reach its goals.
As a fund raising project SLLA is holding a provincial raffle. The draw will be made on April 16 at their Annual General Meeting in Regina. SLLA also accepts sponsors, donations and assistance with the challenge of increasing the awareness of lymphedema. Funds will be used for items such as creating and maintaining a website, educating medical professionals, patients, and the general public, and a host of other ideas.
SLLA is part of a National group with representatives from each province who meet via monthly conference calls. A National Lymphedema Framework was started in 2009, following the mandate of work that has already begun in the UK. The common goals of these groups are:
· Facilitating Support and Networking
· Awareness and Recognition of LE
· Creation of a Canadian Association of Physicians qualified to work with LE patients
· Standards of Care
· Political Advocacy
· Standardized Terminology
· Non-Cancer Related LE
· Standards of Education for LE Therapists
· Children with LE
· Prevention of and Risk Reduction for LE
· Curriculum Development for Professionals (doctors, nurses, physiotherapists, etc.)
· Research Priorities
· Reimbursements or Funding for Treatment and Compression
Garments / Supplies for patients
· Petition to be sent to the Minister of Health/Government Officials
For more information about the Saskatchewan Lymphovenous Association please contact one of the Executive:
Angela Connell-Furi Member At Large Saskatoon 477-1266
Glenda Cook Vice President Regina 545-1038
Tracy Gardikiotis Member At Large Regina 585-0556
Sylvia Krueger Member At Large Regina 757-7173
Barbara Lauterbach Member At Large Prince Albert 763-0864
Eunice Mooney President Prince Albert 922-0851
Verna Schneider Member At Large Prince Albert 764-3863
Evelyne Tucker Secretary Saskatoon 373-4511
Myriam Wiebe Treasurer Saskatoon 987-2216
Saskatchewan Lymphovenous Learning Assoc.
P.O. Box 28068
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