Medical Guidance

Lynn, Glad to know you're here. CPOs are so important! I see a lot of ortho, SCI, neuro, and TBI — so I imagine we may have some crossover. I'll be keeping you in mind for a complex CPO case.

As a critical care nurse and a catastrophic care nurse case manager, I thought I knew the healthcare system, but then I became a patient and saw it from a completely different perspective.

After surviving brain cancer, I pivoted my practice to patient advocacy to help people (patients and caregivers) find the information and tools they could use to be their own best advocate. Like you, I found it eye-opening to be on the other side.

Anne

What a GREAT question, CarolAnn! I hope others will read the full question and lean into the conversation!

I'd also be super curious how many advocates were PATIENTS FIRST, then healthcare workers, now professional advocates.

Even another connection we have, patient transport. The next time we make a trip to Lexington, I am definitely going to have to make a side trip to meet in person for advocacy discussions over a cup of coffee.

Hi, Laurie! i hope folks jump in and join the conversation!

In the mean time, in case you've not used our site this way yet, here's a search specifically for 'oncology':

gnanow.org/advocates?search_type=help_text&help_text=oncology&locations=

Hi, laurie! WELCOME and thanks for making the welcome post!

two quick suggestions — if you're looking for oncology advocates to help you make connections, could I suggest either changing the title/ heading at the top of this post to clearly say that, or a new post with that specific question being SUPER clear? (If you need help putting a heading on the post, just let me know and I can do it for you.)

Second, your photo seems to have zoomed in crazy close on whatever the image was, and isn't visible. could you edit your post and replace it?

Cheryl, thank you SO much for sharing!!! It is so informative and helpful.

Great experience, Cheryl....learning onsite with the entire team is so important.

Val, Thank you so much for sharing this. It's a good conversation starter, and I hope others will join.

Thank you for sharing, Lynn!

AnnMarie — email me at StepwisePatientAdvocacy@gmail.com to discuss!!!

WELCOME! Nancy, we're glad you're here!!!

We would love you to start a conversation about your areas of expertise — whether in the special care and aging space about our providign advocacy for our aging population, or ehre in medical guidance general that is informative — or better yet opens a discussion — about caring for all of us dysautonomics in the world (i'm an O.H. patient and my daughter is a hypertensive non-hyperadrenergic POTS patient)!

Thank you!

Anne, thanks so much for sharing your input! It's so helpful.

Thank you also for volunteering your time to support our bloggers!

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Advocates who want to learn more about #MedicalTourism, please make sure to register for NAHAC's webinar on January 20, 2026. A lot of great information to come!

Kimberlie — we have several advocates in this area. You can find three of them by searching the GNA site by doing a problem/condition search for tourism or for «medical tourism» in quotes. I believe we have at least 2 more, but sadly their profiles don't have these keywords, and i can't recall what they might say. (Which is why we push so hard about keywords now, in onboarding!)

Lynn your post provided me additional insight that I will use to continue to support a patient with an AKA, very minimal stump, who thus far has been unable to wear a prosthesis. Than you for posting your heartfelt story!

Thank you for sharing. I appreciate your truth that «progress is rarely linear». That is a core reality, that once embraced, patients will heal more fully.

Thank you for sharing this, Lynn! Your story perfectly explains the fear, patience, and resilience that so many amputees feel but struggle to put into words. Love your work!

Lynn,
This content is amazing — easy to consume, makes so much sense, so helpful.

Also — it makes huge sense to me. As a rare genetics patient with extreme hypermobility in my feet (among other joints) — we have had to do a lot of work to protect the «not bad foot» while having to rehab the «bad» side.

Thank you again for sharing such great information.

Lynn, Thank you so much for sharing this content. It's incredibly valuable.