🌟 Central Texas Resource
ALWAYS FRESH - The latest in updates and resources.Community and encouragement await for Patients, Caregivers, and Professionals
Welcome to Our Community—A Piece At A Time.
Dear Readers,
Welcome to the first issue of Texas Neurorare—your hub for education, inspiration, and community on rare autoimmune diseases in Texas and beyond. We live with CIDP and adjacent neuro-immune conditions; we understand the confusion, fatigue, and invisibility many of you face. Whether you’re a patient, caregiver, clinician, policymaker, or ally—this space is for you. Our promise: we will try and provide trustworthy information, practical resources, creative connection, and a clear path to advocacy.
Win The War not a Battle
Our Mission
Shine a spotlight on rare autoimmune and neuro-immune diseases—especially those under recognized in Texas.
Empower patients and caregivers with up-to-date, evidence-based knowledge and navigation tips.
Build a welcoming, creative community where every story matters—and help you feel less alone.
What to Expect in Every Issue
Featured Spotlight: Patient and caregiver stories, clinician Q&As, and expert explainers.
Texas Rare Roundup: Texas-focused news in research, care access, policy, and events.
Resource Corner: Curated support groups, reputable orgs, clinics, and clinical trial portals.
Art & Inspiration: Original artwork and creative projects from our community.
Community Voice: Polls, questions, and your submissions—help shape future issues.
In This Issue: The Power of Community
Facing a rare illness can feel isolating. Connection changes everything.
Spotlight: Anna’s Story (Behçet’s Disease, Texas)
After years of misdiagnoses, Anna finally heard “Behçet’s disease”—and found hope through online support groups and Texas advocacy events. Her advice: “Ask questions. Share what you’re going through. Even if just one person hears you, you’re no longer alone.”
Your turn: What helped you feel less alone—a social worker, a clinic navigator, a fellow patient, an art practice, a faith leader? Reply and we may feature your story.
Rare Autoimmune & Neuro-Immune Conditions: Texas and Beyond
Examples include:
Behçet’s disease
Autoimmune hemolytic anemia
Pemphigus and pemphigoid
Relapsing polychondritis
Vasculitis syndromes
Myasthenia gravis
CIDP and related immune-mediated neuropathies
Why diagnosis can take years
Many of these conditions “hide” behind more common labels. People often see multiple clinicians over several years before reaching the right diagnosis. Early recognition, referrals to experienced specialists, and patient self-advocacy can shorten this journey.
Clean Up Misinformation: What’s True—and What Isn’t
Myth: “If your basic labs are normal, it can’t be autoimmune.” Reality: Many autoimmune conditions have normal routine labs early on. Diagnosis relies on patterns—symptoms, specialized tests, imaging, and clinical expertise.
Myth: “Steroids are always the answer.” Reality: Treatment is condition-specific. Some diseases need steroid-sparing agents, IVIG, plasma exchange, biologics, or multidisciplinary care to prevent harm from long-term steroids.
Myth: “If it’s rare, no one can help.” Reality: Centers of excellence, disease societies, and cross-state consults exist; virtual visits are expanding access. Persistence and the right referrals matter.
Myth: “Support groups are just venting.” Reality: Peer support improves coping, adherence, and navigation skills. It can accelerate accurate diagnosis by connecting you to people with similar patterns.
Texas Resources & Upcoming Events
Texas Rare Alliance: State-level advocacy and access initiatives.
Houston Rare Disease Networking Night — Sept 10, 2025
Austin Autoimmune Support Group — Bi-weekly
Clinical Trials: See Resource Corner for search portals and eligibility tips.
Have an event? Reply with details (date, time, location/virtual link, contact).
Resource Corner: Trusted Starting Points
Finding specialists: Academic neurology, rheumatology, immunology clinics; ask for neuro-immunology or rare autoimmune specialization.
Clinical trials: Use ClinicalTrials.gov filters (condition + location: Texas) and patient-friendly trial matching services.
Patient orgs by disease: Look for orgs that publish medical advisory boards, clear guidelines, and transparent funding.
Navigation tips:
Keep a single-page summary of your history, current meds, and key tests.
Bring symptom timelines and photos (e.g., rashes, oral ulcers).
Ask: “What are the top 3 possible diagnoses? What tests could narrow this?”
Request referrals to specialists when progress stalls.
Patient Advocacy in Action
Community fundraisers, policy days, and education sessions raise visibility and improve access to care. Want to help organize or join a local event? Reply and we’ll connect you with Texas partners and volunteer roles.
Art & Inspiration: Editor’s Studio
Did you know creative practice can reduce stress and improve resilience? This month’s feature:
Flower Power
Are you an artist or crafter? Submit your work or links to your portfolio for future features or marketplace spotlights. Drop us a note!
Interactive: Your Voice Matters
Poll: What would help you most right now?
Reliable, plain-language information
Advocacy/legislative connections
Support groups and peer navigation
Creative outlets (art, writing, music)
Other (reply to share)
Community Question
What’s one practical tip you wish you’d learned on day one of your diagnosis journey?
Looking Forward
Each month, we’ll bring Texas-focused news, resources, creative projects, and personal stories. Your participation and feedback guide our editorial calendar. If you’re a clinician, researcher, or policymaker, we welcome expert explainers and Q&As. If you’re a sponsor or community partner, see the Sponsor Note below.
Stay Connected to us at [email protected] our trusted admin email.
Questions, submissions, events, or creative work to share? Drop us a note, to feature an event, include title, date/time, city/virtual, and contact link. To pitch a story or expert Q&A, share your topic and availability.
Sponsor Note: Partner With Texas Neurorare
We invite mission-aligned partners to help us expand access, education, and support—without compromising editorial integrity.Please contact us for information.
Media & Art Availability
Select images, original art, and video content featured in this publication—created in-house—are available for purchase or license. If you’re interested in supporting our work or would like to acquire any pieces, please contact us for details or pricing. All media inquiries welcome.
Disclaimer: |
Let’s get something important out in the open: WE ARE NOT DOCTORS and WE ARE NOT GIVING ADVICE! Everything we share comes from my personal journey living with CIDP, from research and from MY healthcare TEAM. While I’ve walked this path for a number of years, please remember: This content is based on personal experience and publicly available information. It is not intended to diagnose, treat, cure, or prevent any disease. Always consult qualified healthcare providers for medical advice, what works for others may not work for you. We respect your privacy and adhere to HIPAA guidelines when sharing stories or community contributions. All shared experiences are anonymized unless explicit permission is granted. |
