🔥 I couldn’t believe how differently I was treated by the specialists in the US. It only drove home how horrific the medical care is in BC for severe, complex, + rarer chronic diseases. The medical system and most of the people in it are wildly out of touch with patients’ needs.

David Eby This is actually gross to see. I’ve had to go to Washington numerous times the last year and a half for healthcare that I’ve been refused here in Vancouver, due to being a “complex” illness patient who the local system seriously discriminates against. Even basic care is refused

Our BC premier, y’all. WTAF. #bcpoli #Care4ComplexBC

Do y'all ever stop and think about all the people that died from covid? Like they all got Thanos snapped out of existence and it's weird that we all just collectively shrugged and moved on

Apparently the BC Healthcare system wasn’t even done with us for the week. I just saw on the #MillionsMissingBC IG that they’ve reposted an email from Ric Arseneau who runs one of the two main MECFS clinics in Vancouver (the other one he founded and left to run his own clinic),

I don’t think anyone could say she looks to be in end-of-life. But if this is what that looks like for a child w/ #BattenDisease, then let it be known: she deserves to live out her days smiling—w/ the med that makes that possible. #bcpoli #SaveCharleigh facebook.com/share/v/1HSJSo…

💯 This is not an end of life child, David Eby + Josie Osborne 🇨🇦. She is thriving and STABLE thanks to the treatment she’s been on. Just like her doctors and family have said. How can you live with yourselves interfering in her medical care and cutting her off treatment like this?

We are still looking for specialists for ArianeK 💜 #Care4Complex (she/her) . There are medications that could potentially help her, but we need doctors who are willing to go to bat for her in order to try to access them. Please share.

Shameful from Josie Osborne 🇨🇦 + David Eby. Their answer should have been "Of course we will support Charleigh to live out her life as comfortably as possible" as her docs attest the med is still doing for her. What province do we live in if gov can't do that for a child. #bcpoli

This 💯. Medical neglect (combined with sheer incompetence) of rare and complex disease patients is the MO in BC. #bcpoli

If I could make just one change to the BC medical system, it would actually be decreasing the over-regulation of doctors and how they can run their practices, so doctors can just do what they know works. I’ve read all Mark Roseman’s posts about the stats and organisational

Patients and doctors are suffering. Tax dollars are going to waste. People are dying. BC NDP David Eby Josie Osborne 🇨🇦 Time is up. No more excuses. Collaborate with doctors to make our health care system better!

I was just watching this adorable video about a rescue dog with medical needs, who just loved life and needed a bit of help to get another chance. And all I could think (aside from how cute she was) is, I LOVE LIFE TOO, I just need some help to get another chance! Although it

We’ve been asking/looking for help here for so long now, trying to avoid things turning acute like they did a few years ago. If anyone has any leads, please let us know.

At first, I thought each square represented one child killed in Gaza. But each square actually represents TEN children.

4 long years since Ariane was made so much worse due to doctors’ mistakes and their unwillingness to listen 💔 and STILL we can’t find medical care in this province #bcpoli #bchealth #care4complex

I just want my sweet little sickly life back. These are all from my mid 30s when I was too unwell to keep working part time as a web project manager, but still trying to make some kind of smaller life for myself. I was already becoming housebound but did a lot with what I had

We just had an appt. with a new US specialist for ArianeK 💜 #Care4Complex (she/her). Kind, thorough, helpful—no gaslighting/dismissal, which is what we so often get in BC. We're planning to move for better care, which is heartbreaking and we shouldn’t have to. Why can't BC patients have this too? #bcpoli

Neuro Sjogrens Billy Hanlon Just popping my head in here thanks for the tag. I did see that and the recent article (see below) by Manuel Ruiz on haplotypes and his other article on hypopituitarism and hypocorticalism, it’s like reading my life history and a map of what is happening in my body. And then having

Manuel Ruiz Please - if anyone knows anyone in Canada, US, or Europe who would treat someone with this kind of illness, already test documented, please contact me or my husband Bruno De Bondt. I am not okay, I don’t think I can last much longer like this untreated. x.com/arianek/status…