Medical Guidance Condition-Specific Questions and Resources
This community is a space to ask questions about or share information on specific health conditions - whether alopecia or alzheimers, bipolar disorder or bowel disease, and beyond.
I'm Full! Posting to Connect and Get a List for Referrals
Hi! I am FULL. Very full. Likely won't have space again for clients till sept or oct, and launching online courses soon for EDSEers. I'd like to... See More
643 views
9 comments
Mel Randle
4 days ago
If they are in chicago or IL I'd love to help
Elizabeth Schmidt
28 days ago
Hi Rachel, I have some openings. All my clients have chronic conditions, and more than a few have hEDS in addition to other health issues. In addition, I myself have POTs, fibromyalgia, Lupus, Secondary mast cell, and likely hEDS. So I deeply understand what those with chronic conditions are going through. Please feel free to reach out to me at elizabeth@StraightfromtheHeartPA.com or 442-777-3251.
Cyndi Eide
1 month ago
Hi Rachel. I recently started taking clients in need of surgical companion and/or medical travel logistics services. My specialty is with patients needing craniocervical fusion, Chiari decompression, tethered cord, styloidectomy, vascular decompressions as I have experienced those myself. I recently retired and am able to travel with those needing companionship. I am not sure if I can share my website here, new to GNA and so grateful! Cyndi Eide
What Amputees Should Expect From an Advocate
Advocacy can play an important role in life after amputation. Some amputees hire an advocate. Others may have one provided through insurance or a... See More
1 382 views
Kimberlie Williams-Feth, BSW
2 months ago
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.
Clinician and Technician: Stronger Together for Better Patient Outcomes
Throughout my career, I worked as both an O&P technician and an O&P clinician, and that dual perspective changed how I practiced. I... See More
1 308 views
AnnMarie Cross
5 months ago
Thank you for sharing, Lynn!
When Clinician Burnout and Moral Injury Subtly Affect Amputees
Health care systems are under increasing strain, and professional discussions continue to highlight rising clinician burnout across disciplines... See More
1 342 views
Why Representation Matters in Amputee Support: Understanding Different Experiences After Amputation
One of the most powerful things we can offer someone after amputation is encouragement. Hearing that fear is normal, that healing takes time, and... See More
1 367 views
Lisa Mclendon
6 months ago
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!
Val Barschaw
6 months ago
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.
Sofie Schwartz
6 months ago
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!
Preventing Secondary Limb Loss: Protecting the Sound Limb in Unilateral Amputees
Love the attached explanation of how the foot transitions through loading and off-loading. Now imagine this same biomechanical process in a... See More
1 388 views
AnnMarie Cross
6 months ago
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.
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.
You’ve Taken Delivery of Your Lower Limb Prosthesis. Now What?
As an amputee coach, I look at the whole person, whether you choose to wear a lower limb prosthesis or not. For those who choose to... See More
1 386 views
Tracy Kersey
6 months ago
Thank you! That is very helpful information and timely!
AnnMarie Cross
6 months ago
Thanks so much for sharing all of these, Lynn!
cPTSD treatment for women
Hi Group! I'm looking to help get a client into a residential women's program that specifically focuses on trauma and cPTSD. Does anyone have any... See More
1 246 views
AnnMarie Cross
8 months ago
Hi, Rachel! I wish I had a suggestion. Just commenting to boost.
The Truth About EDS: A Doctor's Experience with Medical Dismissal with Linda Bluestein
Dr. Linda Bluestein shares her extraordinary medical and personal journey through the underrecognized world of connective tissue disorders... See More
1 350 views
Living Well with Thyroid Eye Disease (TED)
Enjoy Greater National Advocates's latest blog post by @andrea perryman - a patient turned Independent Patient Advocate with personal success in... See More
1 247 views
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7 months ago
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A Brief Primer on Mast Cell Activation Syndrome and Mediators
FROM: Center for Complex Neurology, EDS & POTS ostSonpred203s.Patients with MCAS (Mast Cell Activation Syndrome) may experience numerous... See More
1 383 views