From Disability to Strength with Ehlers Danlos Syndrome, MCAS, and Regenerative Medicine
Lonnie Rae Presents on stage at DLD
The Power of Evidence-Based, Integrated Care
For my entire life, I have battled hypermobile Ehlers Danlos Syndrome (hEDS) and Mast Cell Activation Syndrome (MCAS)—conditions that left me navigating chronic pain, severe joint instability, and multi-system symptoms. With delays in diagnosis and multiple surgeries, including spinal fusions and joint repairs, my path to recovery remained uncertain.
Through regenerative medicine, orthobiologic therapies, exosome therapy, and carefully structured rehabilitation, I was able to rebuild my strength, restore function, and dramatically improve my quality of life.
This case study explores:
✔ The interplay between connective tissue fragility in Ehlers Danlos Syndome and mast cell-driven inflammation
✔ How exosome therapy and PRP injections supported tissue stabilization
✔ Why long-term Botox use impacted muscle activation
✔ How stellate ganglion blocks and neuro-reset therapies addressed dysautonomia
✔ A comprehensive and evolving strength-building protocol that respected my surgical history
🚨 For patients and professionals alike, this journey highlights the critical role of personalized, multi-disciplinary approaches in managing complex conditions.
Linked to mutations in in Collagen genes and connective tissue (for me, this included COL5A2, COL4A4, and COL17A1), which impair collagen synthesis and vascular integrity, as well as mutations in the pathways responsible for methylation and turning genes on and off.
Often overlaps with dysautonomia, including Postural Orthostatic Tachycardia Syndrome (POTS)
Exacerbates joint instability by degrading collagen and increasing vascular permeability
Tightly linked to EDS, leading to flare-ups of pain and systemic inflammation
📌 Fibromyalgia & Central Sensitization:
Heightened nervous system sensitivity amplifies pain perception
Overlapping symptoms with hEDS/MCAS, creating a cycle of chronic inflammation (“inflammaging”)
🚨 Key Takeaway: The combination of genetic collagen defects, mast cell-driven inflammation, and nervous system hyperactivation creates a self-perpetuating cycle of pain, instability, and dysautonomia.
In Ehlers Danlos Syndrome, the body is bendy, but the spirit must not break—resilience is the force that holds us together when collagen can’t.
in MCAS the Mast Cell is overactiveThe Mast Cell regulates multiple different pathways, like a conductor of the immune system orchestra
My Clinical Journey: From Trauma to Recovery
🔹 Early Signs & Challenges (Childhood to Young Adulthood):
Back pain began around age 12, worsening over time
Spinal concussion & disk rupture from a high school diving accident
Misdiagnosed with anxiety & stress-related symptoms in medical school
Increasing symptoms of dysautonomia (POTS, temperature dysregulation, tachycardia, arrhythmia)
🔹 Major Trauma & Surgeries:
Severe bus accident → fractures of both pubic rami & sacroiliac joint → surgical fixation
A photo taken after a 3-level spinal implant surgery with Dr. Bertagnoli
Neck fusion & three-level artificial disc replacement (2016-2017) due to progressive neurological decline and urgent/emergent management due to loss of sensation and reflexes.
3 level Artificial Disc Replacement (ADR) surgery by Professor Dr. Bertagnoli in Germany; (note: had this been caught earlier, it might have been treatable with regenerative medicine)
3 level cervical fusion + regenerative spine treatments & stabilization for atlantoaxial instability (Dr. Fraser Henderson + Dr. Marko Bodor)
Complications included post-surgical anaphylaxis, arrhythmias, and severe wound healing delays where internal stitches in muscle ripped, leaving a 4-inch opening.
🚀 Despite these challenges, a multi-faceted approach—including orthobiologics, prp/prf/prgf, exosome therapy, neuro-regulation, and targeted rehabilitation—allowed me to rebuild function.
Healing is not about erasing pain, but about understanding its language and learning to move with it, not against it.
Regenerative Medicine: The Role of Exosome Therapy, PRP & Peptides in Ehlers Danlos Sydrome
🔹 Orthobiologics & Exosome Therapy
✔ Hundreds of PRP (Platelet-Rich Plasma) & exosome injections to stabilize connective tissue
✔ Hyperbaric oxygen therapy to accelerate healing (petitioned for insurance coverage for a non-healing surgical wound)
✔ Regenerative peptides (BPC-157, TB-500, thymosin alpha) to modulate inflammation
🔹 Stellate Ganglion Blocks & Neuro-Reset Therapies
✔ 6 cycles of bilateral (both side) stellate ganglion blocks (SGB) improved dysautonomia & autonomic nervous system function and helped promote remission
✔ Neuro-reset protocols (Dr. Kuo, Extension Health & Dr. Cook, Bioreset) helped regulate systemic inflammation & dysautonomia
🔹 Botox Use & Discontinuation: The Unexpected Strength Gains
✔ 15 years of Botox (~20 units every 4–6 months) for tension headaches & aesthetics
✔ After discontinuing Botox, I saw significant strength gains, indicating systemic muscle suppression effects (studies show that botox may be linked to systemic weakness)
🚨 Key Takeaway: Regenerative therapies—including exosome therapy and PRP—played a critical role in tissue stabilization, inflammation control, and recovery acceleration.
Functional Recovery from MCAS and Ehlers Danlos Syndrome Disability
The Science Behind My Recovery: Genetics, Inflammation & Strength
🔹 Surgical Success is Only Step One:
✔ Post-surgical rehabilitation, neuro-reset therapies, and strength-building were essential for lasting recovery.
Conclusion: A Path Forward for EDS, MCAS & Regenerative Medicine
Flexion Extension MRI showing my Chiari Malformation
From serious disability to restored function, my journey underscores the importance of integrating regenerative medicine, targeted strength training, and inflammatory modulation in Ehlers Danlos Syndrome and Mast Cell Activation Syndrome.
For patients & clinicians, this case study highlights:
✅ The evolving role of exosome therapy & orthobiologics in connective tissue disorders including Ehlers Danlos Sydrome (EDS)
✅ How mast cell regulation impacts hypermobility & systemic inflammation
✅ Why a personalized, multi-disciplinary approach is essential for recovery
🚀 This experience is a testament to how evidence-based, patient-centered care can transform lives—even in the face of complex, genetically driven conditions.
A body built on fragile scaffolding demands precision, not force—strength is earned through patience, not aggression.
🚨 As of 2025, no exosome products are FDA-approved for therapeutic use in the U.S., and their use remains limited to research and cosmetic applications. Similarly, most stem cell therapies are not FDA-approved, except for hematopoietic stem cell transplants for specific conditions. Trials are ongoing, particularly in orthopedic applications, to evaluate safety and efficacy.
Stem cells can be sourced from your own body (BMAC – Bone Marrow Aspirate Concentrate) or from donor-derived orthobiologics, each subject to different regulatory pathways in the U.S.. While autologous (self-derived) treatments may have fewer restrictions, allogeneic (donor-derived) products require FDA oversight as biologic drugs.
This content is for educational purposes only and should not be interpreted as medical advice or regulatory guidance. Additionally, given my international experience, this discussion includes global perspectives on emerging research and regulations.
