Sarah Johnson

New Mexico Licensed Massage Therapist #8145
Light Spirit Studio, L.L.C.
Sarah

Sarah Johnson

New Mexico Licensed Massage Therapist #8145
Light Spirit Studio, L.L.C.
Advocate Location
Santa Fe , NM 87505
Specialty
Medical Guidance
Other Services
Survivor Support
TeleAdvocacy Available
Offers FREE Initial Consultation
Call Advocate Email Advocate
*Greater National Advocates Terms of Use Apply
How I Can Help
In person, phone, or virtual sessions focus on:

Personal Navigation
—Deep History: Chronic complex illness often hits every system; you know that many evidentiary motifs of your story haven’t even been heard. Tell your story in detail this once. We’ll survey all the potential minor features that could help your care team to successfully identify what’s going on. I’ll highlight anything you’re saying that I know to be important in this niche, and I’ll help root out any possible evidence that might otherwise be missed.
—Assessments Walk-Through: Validated assessments make your case more clear by providing concrete measures accompanied by a framework for the conditions they support. I can provide guidance and support in finding, interpreting, and completing those that may likely be relevant.
—Advocacy-Triage: Develop an advocacy plan based on current unmet needs: navigational capacity, diagnoses, social support, medical team adequacy, and more.
–—Health Summary Composition: We’ll reframe and concisely summarize your history to lift clarity out of complexity, aiding your healthcare team in fully seeing you.
—Personalized Referral List: I’ll create a list of referrals to meet your health, financial/insurance, and location/travel/accessibility needs, drawing from my various local, national, and international networks of highly specialized, functionally-oriented healthcare practitioners and from trustworthy directories.
—Complex Care Support: We’ll make sure you understand your treatment plan and strategize to manage it well despite any barriers. Systematization and tracking can make a difference and can be built around the way your mind and life work. If needed, we’ll also engage your local supporters to help put these tools into action.

One-on-one Education & Resources
—hEDS &/or MCAS 101: You’ll learn to understand the basic systems-relationships, mechanics, and physiology relating various typical comorbidities. We’ll also discuss treatment pathways. Learning technical, non-diagnostic language and frameworks allows for stronger healthcare communication. Family and other supporters are welcome to join.
—Resource Finder: I’ll compile a list of trustworthy educational resources suitable for you, your kids, your workplace, your family & friends, and/or your healthcare team.

Group and Public Offerings
—Resource Group: monthly meetups (free; local only in Santa Fe, NM, USA)
—Private and Group Manual Self-Care Classes: manual care strategies for pain, neurovascular compression syndromes, and other concomitants of hypermobility and immune dysfunction
—Practitioner Education: I cannot yet provide CEUs, but am glad to share what I’ve come to understand about working with MCAS and hypermobility clients on the table

Requests for accommodation are welcome and will be met in any way possible. Shorter sessions, AI-assisted notetaking, reclining seating, communication adjustments, natural or dimmed lighting, avoidance of all possible fragrances, and many more are common requests and easily met in my practice.
Important Information About Me
  • I offer a FREE Initial Consultation
  • I offer TeleAdvocacy Service
  • My geographical area of practice is most services available through TeleAdvocacy anywhere. For my home area of Northern NM, USA, I’ll help identify your most promising and accessible specialist hubs and/or optimize & coordinate local care while filling gaps via TeleHealth.
My Survivor Support Advocacy Qualifications
I am a survivor of Mast Cell Activation Syndrome, Consensus-2 basis with many typical comorbidities
For over fifteen years I was very ill. In the worst of it, I didn't think I'd survive the night. Complex barriers including acute trauma on top of CPTSD, sudden social isolation, and lacking the health to start earning money just as I came into adulthood and needed to do so meant no medical care, little support, even time unhoused. I understand the fear, the complexity, and the urgency that come with sudden descent into chronic illness. I'm here to provide shortcuts to the best information I've found and to support you in navigating diagnosis and care for chronic, complex conditions, whatever limitations we need to work around.
Why I Became A Professional Health Care Advocate
I spent twenty years looking for answers. I had been a competitive athlete in high school. Two years later, my legs burned and my breath rasped ascending the college library stairs. Deep fatigue and pain punished formerly typical workouts for five days. That was just the beginning. Soon my face and neck were perpetually swollen; parts went tingly or numb. My GI tract froze. Heat flooded me. My chest pounded. Terrifying episodes were so severe I went to bed accepting that I might not wake.

For ten years I lived on a tightwire, learning to control symptoms with whatever tools I found for myself. The next seven were a balance beam—still no medical aid, but fair control… a world of difference. Three years were a good sidewalk; a couple of practitioners believed me, and I could give them enough focusing language to help them help me. Now I have my life back. Dysautonomia, immune reactivity, even joint instability have all radically improved.

Research in these areas has been my dream since I was willing myself to survive each night; by now I owe so much to the process I can’t imagine more satisfying work. If I have come so far, what answers can we find for you?
Contact Advocate
Formal Education
St. John's College, Santa Fe, NM, Bachelor of Arts in Liberal Arts
Additional Skills
My specialties in advocacy involve working at the margins where answers are not yet clear—where peer-reviewed solutions haven’t yet come along, yet life needs to be protected, supported, and resourced with all tools at hand.

My main goal is to get clients to practitioners and to information that are philosophically mature, technically grounded, and ambitious of advancing the margins of medicine. They respect the inclusive, big-picture scope essential to treating complex chronic illness, and practitioners bring along their innate, practiced, protected sense of humanity which acknowledges complexity even when doing so invites the very hard work of problem-solving.

I’m also here to help bridge certain gaps inherent in this area of care. Effective navigation often requires a great deal of patient expertise. I help with:
—Navigation in the early stages of discovering what might be going on
—Working with or without diagnoses to find practitioners with proven skills and willingness to explore all likely aids
—Facilitating medically supervised n-of-one research exploring ideas of clinical promise for their personal potential

All in all, I help clients to explore what their bodies might be telling them and share the bird's eye, ecological view of all the clustered conditions that arrive with hEDS, POTS, and hypermobility. Observing the body and beginning to understand how each each condition connects to the rest, better data and better questions emerge. Optimized care often means simplified care—lower-effort, higher-impact ideas that synergistically restore function and allow deeper healing the room, the energy, and the clarity to occur.

Knowledge Areas:
—MCAS (mast cell activation syndrome) via Consensus-2
—hEDS (hypermobile Ehlers-Danlos syndrome)
—dysautonomia/POTS (postural orthostatic tachycardia syndrome)
—Neurovascular compression syndromes (nutcracker syndrome, MALS/median arcuate ligament syndrome, thoracic outlet syndrome, pelvic venous congestion syndrome, etc.)
—Gastroparesis
—Fundal accommodation insufficiency
—Vagal insufficiency
—Brain fog
—Fatigue
—Post-exertional malaise
—Myalgic encephomyelitis/chronic fatigue syndrome
—Mold hypertoxicity
—Small-fiber neuropathy
—Craniocervical instability/upper cervical instability
—Chiari malformation
—Tethered cord
—cerebrospinal fluid/dural leaks
—Finding manual care and medical providers who are more likely than average to be able to appropriately handle complex cases
—Low histamine diet
—Many other therapeutic diets
—Functional, holistic, and alternative care options
—Local resources for Santa Fe and New Mexico residents
—Sourcing high-quality information on all of the above & packaging it for any audience you need it for
—basic connections with tick-borne illnesses and where to find capable resources

Populations:
—Present/past athletes
—PTSD/CPTSD
—Neurodiverse
—Parents of young children
—Youth
—Financially underresourced
—Rural
—Change of faith
—Academic

I also offer bodywork for local clients:
—Palpation & Observation Session: We’ll gently work with your body to observe and adjust subtle soft-tissue mechanics, watch their responses, guess at possible system interactions, collect questions that may be useful to ask your care providers, and record any findings that may support your navigation.
—Manual Therapy: Weaving together what suits your body of numerous bodywork modalities, we’ll work to ease chronic pain and other symptoms of hypermobility and immune dysfunction. Techniques often include trigger point work, myofascial release, neurovascular decompression, positional and position of ease techniques, proprioceptive neuromuscular facilitation, circulatory work, postural adjustments, cupping, and craniosacral basics.
Professional Affiliations
Select Details on Training, Credentials, and Memberships:
—International Society for Mast Cell Activation Syndrome: Society Member, Patient Advocacy Committee Member, MASTerChat (continuing education) Coordinator, Pediatric Research Working Group Contributor
—The Ehlers-Danlos Society's EDS & HSD Global Alliance: affiliated group representative (Santa Fe Hypermobility Resource Group)
—Northern NM Interdisciplinary Provider Meetup & Journal Club: founding member, co-leader
—Santa Fe Hypermobility Resource Group: founder
—State of New Mexico Licensed Massage Therapist #8145

For complete, up-to-date information please see the CV & Training page on my website.