PRISM Spine and Joint

04/30/2026

So grateful these women are out there. They have changed the world. Read on. I'll tell you how.

In 2019 when I founded PRISM and 2020 when I founded a nonprofit for EDS research (now part of EDS Society), I felt the weight of advocacy in a way that kept me up at night. Why did so few doctors know about "the triad"? How could we change this?

The mentors who so generously guided me had worked and continued to work tirelessly.

Why wasn't it enough?

These women and others have changed the landscape. I like to think I played my part as best I could. But knowing them and knowing they are out there has given me a peace that nothing else could. From the bottom of my heart, I am so grateful for these leaders and the others who have started labs, academic programs, published papers, grown foundations, raised money for research, donated.

Learn more at The EDS Society, The Norris Lab, MUSC MIND where this photo was taken, and each of their social media sites which are gems and wealths of information. Follow us for more information as well.

03/23/2026

Compression 3: Brand Recs, final details

Follow us, ask questions, and don't forget to check in with your care team and read the full caption on part 1 as this is not medical advice.

03/23/2026

Compression 2: Science, Symptoms, Practical tips

03/23/2026

Too tight
Can't breathe
Claustrophobic
How many times has the patient who most needs it not been able to benefit from it?
Our job is to problem-solve

Abdominal distension and fluid due to pelvic venous congestion
Lymphedema of the extremities and torso
Angioedema (a side effect of almost every MCAS med AND of barrier dysfunction and blood vessel inflammmation)
Joint support, postural support
Better oxygenation and waste management for tissues

1. Graduated garments
2. Graduated approach
- Start with very gentle compression by over-sizing garments if needed or choosing brands with lower mmHg
- Garments themselves have stronger compression further from heart and weaker compression closer to heart
- Avoid choke points like tight bands at top of garments or "waist trainers"
- Consider layering garments for a more custom approach
So much more!

Always work with your care team on your plan
Side effects such as elevated BP with compression boots may not be accounted for without proper expertise of a knowledgeable care team (at PRISM we do close monitoring when introducing these types of modalities)
Gentle, stepwise, medically supervised interventions are required in complex conditions

What questions do you want answered?
Follow and let us know!

03/20/2026

Complex patients require time, consideration and compassion. One patient was feeling "POTSy" at the same time as I was one afternoon and wanted to utilize our appointment time to discuss overall care plan as she was feeling overwhelmed. "Sole Sessions" were born. Until this post, they were our little secret, although strategy and coping discussions are quite common in our office!

Each provider has their own personality, style, relationship to their patients. What we can all do is dig deeper, take time to ask questions, understand the complexity of the conditions we treat, and acknowledge limitations: our own and those of science and research.

If something isn't making sense, dig deeper. If a patient is overwhelmed, sit down and talk as partners in care. Guillan-Barre Syndrome is life-threatening and could easily have been written off as a "MCAS Flare". But in any exacerbation, the root cause should be sought. We can't accept shoulder shrugs just because a patient has EDS. If an immune system or PT plan or anything else is not working, we need to dig deeper. This takes time, the time our patients deserve. The time I hope every patient will soon have access to receive as more education and advocacy efforts take hold.

For today, PRISM and I (Dr.Z) will do our best to be this for our patients and contribute to these efforts.

03/13/2026

A doctor's appointment shouldn't feel like defending a thesis...and the relief of finally putting down this weight often brings tears 🤧
It. Is one of the many unexpected things I could never have predicted before working with the EDS and invisible illness community.

It is both heartbreaking and a profound honor to hold space or hold the patient themself (depending on their preference and my shoulder) and just let them feel those guardrails soften.

Of you have invisible illness, or even a visible condition, what do YOU wish your doctor would say?
What have they said that worked?
If you are a clinician, share any insights as well!

03/12/2026

Too much pressure on your head?
Ask your doc/PT/OT if this is safe for you to do!!!
Follow for quick easy ways to feel better at home and n the go. (not medical advice)
#

01/27/2026

Patients with mobility issues and chronic pain, unpredictable autonomic symptoms, or waxing and waning Multisystem complex disorders face many challenges. To ease just one, here is an informational handout patients and their healthcare providers can use as a template for accommodations. It is not perfect or comprehensive, but we hope it helps!

What else might help you?

Leave us a note and we will do our best!

01/01/2026

From all of us to all of you.

01/01/2026

From all of us to all of you…

12/31/2025

12/23/2025

We at PRISM want you all to enjoy the rest of the holiday season so here are a few more tips for feeling your best.