Rebecca Share-Howard

BCPA
Whole Story Advocacy
Rebecca

Rebecca Share-Howard

BCPA
Whole Story Advocacy
Advocate Location
Marina del Rey , CA 90292
Specialty
Medical Guidance
Other Services
Survivor Support
TeleAdvocacy Available
Offers FREE Initial Consultation
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*Greater National Advocates Terms of Use Apply
How I Can Help
As a person with lifelong lived experience with many types of chronic pain, I have dedicated my advocacy practice to serving those with all different forms of chronic pain. This often involves helping clients with complex cases, because chronic pain can be caused by numerous diseases, syndromes, and forms of trauma to the body, and frequently spans across multiple different body systems.

I strive to improve clients' quality of life by taking a look at the big picture: considering all aspects of their lives, including their lived experience, physical limitations, difficulty with tasks of daily living, social support, mental health struggles, and of course, medical problems.

Every client gets what every patient deserves: someone who knows the system, has the time to listen, and answers only to you. I'm the person that is always in your corner in a system that's difficult to face alone.

Care coordination and medical navigation services:
- Communication with and between various providers
- Organization, tracking, and scheduling appointments
- Records and medication reviews, which when combined with getting to know my clients' stories from their perspectives, allows me to create a comprehensive yet concise health summary document to take into providers and hospitals that allows for higher quality care
- Provision of support resources, including resources such as support groups, caregiver support, transportation services, disability services, and much more
- Research of providers, including second opinions
- Research and education on the different types of pain, and the structural and functional changes that occur in bodies exposed to chronic pain
- Research and education on existing diagnoses and treatments
- Help getting accurate diagnoses when pain is inadequately diagnosed or undiagnosed completely
- Help finding alternative or unexplored treatments
- Helping clients make informed decisions, including decisions related to providers, testing, treatment, and surgery
- Coaching to improve health literacy and self-advocacy
- Preparation for and attending provider visits. This includes discussions with clients prior to visits to determine and prioritize important information clients' wish to convey, questions they would like to address, and strategies for the best ways to convey that information in a limited time frame.
- Attending provider visits, including taking notes, and ensuring client voices are heard and understood
- Providing after-visit summaries to clients to document what was discussed during visits, including differential diagnoses mentioned, testing recommendations, treatment recommendations, procedure or surgical recommendations, and steps to be considered in the future
- Preparing for surgery to ensure the best outcomes and experience in the hospital, including adhering to pre-surgical protocols and educating clients on their rights and how to self-advocate in a hospital setting
- Hospital/inpatient visits and emergency visits to oversee the care being provided, ensure safety precautions are being implemented, conference with nursing and other staff regarding client care, and ensure safe and proper discharge
- Making a plan with concrete steps to improve care, and following through every step of the way.
- Improvement of quality of life, including exploring coping strategies for managing pain, problem solving creative solutions to help with tasks of daily living, and reducing the burden of navigating the system alone
Important Information About Me
  • I offer a FREE Initial Consultation
  • I offer TeleAdvocacy Service
  • My geographical area of practice is In-personal and virtual advocacy services in Los Angeles, virtual advocacy nationally across US
My Survivor Support Advocacy Qualifications
I am a survivor of Chronic pain, Chronic back pain, Mast cell activation syndrome, Chronic migraines, Occipital neuralgia, Sacroiliitis, POTS, IBS / SIBO, Hypertension, Acromegaly, Insomnia / Sleep paralysis, Depression, Anxiety, CPTSD
Why I Became A Professional Health Care Advocate
My journey began when I was 10 years old and diagnosed with chronic pain, which, over the years advanced and created or amplified many other health problems. I have never fit neatly into one easily diagnosable "box", and I am on a continual journey of learning about my pain. Things changed again when I had my first spinal surgery at age 18, after which I developed severe, restricting chronic back pain that I live with to this day. As I aged I faced more surgeries, accumulated more health problems, including more types of chronic pain, tried more treatments, and saw more specialists, I began to experience the same problems again and again: gaps in care through which those with chronic pain or complex illness too often fell, how frequently my voice and so many others' weren't being heard, medical fragmentation that affected my care, and medical mistakes.

After years of work, I started Whole Story Advocacy to put that hard-earned lived experience — alongside formal training and hands-on clinical work — to dedicate myself to the people I understand the best: people with chronic pain and complex illness — the people who fall through the cracks.
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Formal Education
University of California, Berkeley, B.A. Public Health & Minor in Disability Studies, 2015
Additional Skills
Experience with primary and secondary chronic pain disorders and chronic pain of unclear, unknown, or complex etiology, including:
- The different types of pain: nociceptive, neuropathic, and nociplastic, including how and when these types of pain can overlap, the underlying mechanisms that drive them, and their involvement in chronic pain
- Central Sensitization Syndrome
- Allodynia and Hyperalgesia
- Chronic widespread pain syndromes, including Fibromyalgia
- Chronic neck and back pain (cervical, thoracic, lumbar, and sacral), including chronic neck and back pain of unknown etiology, chronic back pain post spinal surgery / chronic back pain post spinal fusion / Failed Back Surgery Syndrome (FBSS) / Post-Laminectomy Syndrome
- Chronic headache disorders, including Chronic Migraines and Status Migrainosus
- Occipital neuralgia
- Chronic gastrointestinal pain: Irritable Bowel Syndrome (IBS) (Constipation Predominant Irritable Bowel Syndrome (IBS-C), Diarrhea Predominant Irritable Bowel Syndrome (IBS-D), Mixed Irritable Bowel Syndrome (IBS-M), and Post-Infectious Irritable Bowel Syndrome (PI-IBS)), Small Intestinal Bacterial Overgrowth (SIBO), Functional Dyspepsia, Gastroesophageal Reflux Disease (GERD)
- Chronic pelvic pain, including Vulvodynia and Vestibulodynia

Experience with comorbid conditions related to chronic pain:
- Autonomic Dysfunction / Dysautonomia: Cardiovascular Dysautonomias, specifically Orthostatic Intolerance Syndromes such as Postural Orthostatic Hypotension Syndrome (POTS) (Hyperandrenergic POTS, Hypovolemic POTS, and Neuropathic POTS), Orthostatic Hypotension, and Inappropriate Sinus Tachycardia. Gastrointestinal Dysautonomias, specifically Dysautonomia-Related Dysmotilites.
- Mast Cell Activation Syndrome (MCAS)
- Sleep disorders, including Insomnia, Parasomnias, Sleep Paralysis
- Psychiatric Disorders, including Major Depressive Disorder, Generalized Anxiety Disorder, Post-Traumatic Stress Disorder (PTSD), Chronic Post-Traumatic Stress Disorder (CPTSD)

Experience with Neuroimmune Axis Disorders, into which many of the above listed conditions fall

Experience with Pituitary Adenomas and Rare Disease:
- Pituitary Adenomas, especially Growth Hormone producing Pituitary Tumors, and Acromegaly
Professional Affiliations
- Lifelong personal lived experience with multiple chronic, complex illnesses, including chronic pain
- Informal/non-professional advocacy work with Parkinson's patients and a TBI case
- Two years of clinical work and hands-on patient experience as a Patient Care Coordinator for the Chief of Clinical Gastroenterology, Cedars-Sinai
- Completion of University of Miami Patient Advocacy Certificate Program
- Board Certified Patient Advocate
- Membership to APHA