3 Strikes Week 2: What Really Matters

[mossmonday]

“What really matters is that your siblings get tested for polycystic kidney disease

Comments

[roina_arwen]

One of my friends had PKD and did dialysis but eventually needed a kidney transplant. One of my favorite musicians - Mandy Harvey - has EDS and it caused her to lose her hearing when she was about 18, but she’s an amazing singer regardless. Best of luck with your treatments.

[mossmonday]

I remember seeing Mandy Harvey on AGT! I don't think I had known prior to seeing her on there that EDS could affect your hearing. She's amazing.

[roina_arwen]

Yes, AGT is where I first found her. She just put out a new CD, “Paper Cuts”, and it’s amazing! I follow her on Facebook, lol.

[mossmonday]

I'll have to give it a listen!

[engarian]

I feel for anyone with an unusual health condition. One of my best friends has RDS, a rare disease that less than 700 people world-wide have, and it's been difficult for her for many years. We're fortunate in that we live close to the Mayo Clinic, so she can get her care through them and it's excellent, but not everyone is that lucky.

- Erulisse (one L)

[mossmonday]

Yes, I live in NYC and feel like I could never live outside a major city for this reason. In fact, it would be pretty hard for me to move in general now because I have such a solid care team established. I do a lot of writing about medical self-advocacy and I know so many of the things that are easy for me to advocate about are harder for people who have a much more limited number of providers to choose from.

[adoptedwriter]

Can you look for another doctor?

[mossmonday]

At this point, it's basically moot. I have a diagnosis, which was the point of seeing a geneticist, and this was a decade ago. The magical provider who will look at me holistically for EDS doesn't exist - I wish it did.