Advocates from around the world are joining together on March 6 to shine a light on an often misunderstood and undiagnosed disease – lymphedema.
The City of Courtenay is helping by approving a proclamation acknowledging this date.
BC Lymphedema Association (BCLA) founding member and local support group facilitator, Lynn Holloway, states that because there is no area of medicine that covers this disease, so many people go undiagnosed for years or do not know what to do to help themselves.
“BCLA was created for this very reason – we knew nobody was going to save us, so we had to save ourselves,” said Holloway, in a press release. “We are so very fortunate to have a trained lymphedema therapist in the Comox Valley, Bryan Hill, RMT, who is able to help people manage their disease more effectively.”
Lymphedema is an incurable disease afflicting 250 million people worldwide and about 130,000 in B.C. It is one of the most underdiagnosed diseases in the world. More people have it than MS, Parkinson’s, ALS, Aids and muscular dystrophy combined. It is estimated that one million Canadians are affected.
Lymphedema is caused by damage to the lymphatic system through surgery, trauma, cancer treatment or genetic malfunction leading to improper development or dysfunction of the system. Lymphatic fluid accumulates in the tissues resulting in chronic and disfiguring swelling in one or more parts of the body.
The lymphatic system assists in maintaining fluid balance in the body and is an integral part of the immune system, transporting infection-fighting cells to tissues that require assistance. The affected part(s) of the body becomes prone to cellulitis infections. Complications from cellulitis can have serious, potentially life-threatening consequences.
Canada is quite behind other countries that offer various surgical options and have clinics where patients can live-in for a time to get their condition under control. In B.C. there have been a handful of doctors in the Lower Mainland with some knowledge and interest in the disease.
“We are excited to announce a new program, the VGH/UBC Lymphedema Program, which has been seeing patients for one afternoon per month at the Diamond Centre in Vancouver for the past year and is currently fundraising for equipment,” said Holloway. “This is the only evaluation service covered by MSP in B.C. Ongoing treatment is only available through private therapists offering specialized therapies such as manual lymph drainage.”
Management of this disease is costly, requiring daily or regular use of medical devices such as compression garments, pneumatic compression pumps, and/or specialized custom wraps and bandages. Garments and medical devices can range in price from around $100 to upwards of $10,000. Many people with lymphedema are unable to work at their former capacities or are on fixed incomes. All of these combine to create financial hardship for those with lymphedema that have to deal with this expensive condition on their own.