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.