Sarah Johnson
Advocate & manual therapist focusing on mast cell activation, hypermobility, dysautonomia, and neurovascular compression
Light Spirit Studio, L.L.C.
Sarah Johnson
Advocate & manual therapist focusing on mast cell activation, hypermobility, dysautonomia, and neurovascular compression
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
*Greater National Advocates Terms of Use Apply
How I Can Help
I shortcut clients to practitioners ready for the complex project of treating MCAS and hypermobility-related conditions. While it's hard to see from the outside, much is now understood well enough to help a lot of people significantly and simply. Clients best served by my work are new to pentad awareness and looking for their first maps, or haven't found solutions yet but haven't given up.
Personal Navigation
—Deep History: Chronic complex illness often hits every system; you know that many evidentiary motifs of your story haven’t ever been heard. Tell your story in detail this once. I'll highlight what is critical to share and how.
—Assessments Walk-Through: Validated assessments create concrete measures and a framework. I'll help identify, translate, and complete those that should help your case.
—Advocacy-Triage: Develop a plan for current unmet needs: navigational capacity, diagnoses, social support, medical team adequacy, etc.
—Health Summary Composition: We’ll reframe and concisely summarize your history to help your healthcare team lift clarity out of complexity.
—Personalized Referral List: I’ll create a list of referrals that consider your presentation, resources, and any barriers to care.
—Complex Care Support: We’ll make sure you understand your treatment plan and strategize to manage it well. Systematization can be built around the way your mind and life work. We can also engage your local supporters.
One-on-one Education & Resources for Clients, Family, Friends, and Healthcare Team
—hEDS &/or MCAS 101: Learn basic systems-relationships relating typical co-conditions. Discuss treatment pathways. Understanding these allows for stronger healthcare communication and sharper treatment fit. Family and other supporters are welcome to join.
—Resource Finder: I’ll compile a list of trustworthy educational resources suitable for any audience you indicate.
Typical accommodations include shorter sessions, AI or voice-assisted notetaking, communication adjustments, natural or dimmed lighting, reclined seating, and many more.
Personal Navigation
—Deep History: Chronic complex illness often hits every system; you know that many evidentiary motifs of your story haven’t ever been heard. Tell your story in detail this once. I'll highlight what is critical to share and how.
—Assessments Walk-Through: Validated assessments create concrete measures and a framework. I'll help identify, translate, and complete those that should help your case.
—Advocacy-Triage: Develop a plan for current unmet needs: navigational capacity, diagnoses, social support, medical team adequacy, etc.
—Health Summary Composition: We’ll reframe and concisely summarize your history to help your healthcare team lift clarity out of complexity.
—Personalized Referral List: I’ll create a list of referrals that consider your presentation, resources, and any barriers to care.
—Complex Care Support: We’ll make sure you understand your treatment plan and strategize to manage it well. Systematization can be built around the way your mind and life work. We can also engage your local supporters.
One-on-one Education & Resources for Clients, Family, Friends, and Healthcare Team
—hEDS &/or MCAS 101: Learn basic systems-relationships relating typical co-conditions. Discuss treatment pathways. Understanding these allows for stronger healthcare communication and sharper treatment fit. Family and other supporters are welcome to join.
—Resource Finder: I’ll compile a list of trustworthy educational resources suitable for any audience you indicate.
Typical accommodations include shorter sessions, AI or voice-assisted notetaking, communication adjustments, natural or dimmed lighting, reclined seating, and many more.
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), progressive hypermobility, dysautonomia (neurogenic POTS), whiplash, various neurovascular compressions, multiple food intolerances, hyperpermeable gut, CPTSD
Working with the MCAS and hypermobility spectrum is what I dreamed of surviving for over the fifteen years that I was very ill. In the worst of it, I didn't think I'd survive the night. Complex barriers including acute trauma, CPTSD, social isolation, and lacking the health to earn effectively just as I came into adulthood 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 ascending the library stairs. Deep fatigue and pain punished formerly typical workouts for five days at a time. That was just the beginning. My face and neck swelled; parts went tingly or numb. My GI tract froze. Heat flooded me. My chest pounded. Terrifying episodes of breathlessness were so severe I went to bed accepting that I might not wake.
For ten years I lived on this tightwire, slowly learning to control symptoms with no medical aid. The next seven, I had fair control… a world of difference. For three years I worked with a couple of practitioners who believed me. Even though they didn't understand, I could give them enough focusing language to help them help me. Now I simply have my life back. Dysautonomia, immune reactivity, even previously progressive 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 this work I can’t imagine anything I'd be more satisfied to do. If I have come so far, what answers can we find for you?
For ten years I lived on this tightwire, slowly learning to control symptoms with no medical aid. The next seven, I had fair control… a world of difference. For three years I worked with a couple of practitioners who believed me. Even though they didn't understand, I could give them enough focusing language to help them help me. Now I simply have my life back. Dysautonomia, immune reactivity, even previously progressive 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 this work I can’t imagine anything I'd be more satisfied to do. If I have come so far, what answers can we find for you?
Contact Advocate