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Table of Contents

1. Editor’s Note: Celebrating Caregivers & Community

2. CIDP News & Research: Fast-Moving Advances

3. Feature Article: When Roles Reverse—A Letter to Caregivers, Patients, and the Courage in Between

4. Treatment Spotlight: Riliprubart Phase 3 Trial Update

5. Community Voices: Stories of Support

6. Ask the Expert: Finding Local Caregiver Resources

7. Resource Corner: Tools, Groups, and Events

8. Disclaimer

✉️ Editor’s Note: Celebrating Caregivers & Community
This issue is dedicated to the unsung heroes who are on the other side of this war every day—me.

Your patience, love, and resilience keep us going. We honor you by sharing the latest CIDP breakthroughs, personal stories, and practical tips to support both patient and caregiver journeys because you never know when it may be a reversal of roles.

🚨 CIDP News & Research: Fast-Moving Advances

• Complement Inhibitor Trials: The global Phase 3 MOBILIZE and VITALIZE studies for riliprubart are now enrolling in 28 countries, aiming to reduce relapses in both treatment-resistant and standard-of-care CIDP patients.

• FcRn Inhibitor Approvals: Efgartigimod (Vyvgart Hytrulo) has entered routine use after FDA approval, offering at-home subcutaneous dosing to lower pathogenic antibodies.

• CIDP Patient Registry: The Vitaccess Real CIDP registry launches July 31, 2025, to track long-term outcomes, quality of life, and treatment decisions in 300+ U.S. and European patients.

  

  A Change in Plans

When Roles Reverse: A Love Letter to Caregivers, Patients, and the Courage in Between

Life has a way of surprising us, doesn't it? Just when we think we've got things figured out, it throws us a curveball. This is a story about one of those curveballs – a story of love, resilience, and the unexpected beauty that can bloom from life's challenges.

Imagine celebrating lucky edition #13 of your CIDP newsletter. You're feeling accomplished, connected to your community, and a little proud of the support you've been able to provide. Then, in the blink of an eye, everything changed. In the other room I hear a fall, there’s injuries enough for a “casual” ER visit. Suddenly, you find yourself in an unfamiliar role – that of a caregiver.

For someone living with CIDP or other daily physical challenges this role reversal can feel both strange and profound. You've been the one receiving care, navigating the daily challenges of a chronic condition. Now, you're the one offering support, tending to an acute injury. It's a shift that brings with it a whirlwind of emotions, insights, and questions.

Let's pause for a moment and acknowledge the complexity of this situation. You, with your CIDP, have a deep understanding of what it means to need help. You know the frustration of simple tasks becoming Herculean efforts. You understand the mental toll of constant adaptation. This experience gives you a unique perspective as a caregiver – a sort of superpower, if you will.

When you ask your spouse, "Would you like me to bring you water?" instead of just bringing it, you're not just offering a drink. You're offering choice, preserving dignity, and showing that you understand the importance of maintaining autonomy even when injured. These are lessons you've learned firsthand through your CIDP journey.

But let's be honest – there's also a tangle of complex emotions to navigate. You might find yourself thinking, "At least this will heal" and then feeling guilty for that thought. It's okay. These feelings don't diminish your spouse's current pain or your role as a caregiver. They're simply a reflection of the intricate emotional landscape when chronic and acute conditions intersect in one household.

Now, let's consider your spouse's perspective. They've been your rock, your steady support through the ups and downs of CIDP. Suddenly, they're the one needing help. This role reversal can be deeply disorienting. They might struggle with feelings of vulnerability, perhaps even guilt about needing assistance when "you're the one with the real condition."

But here's where something beautiful happens. This injury, while temporary, offers your spouse a window into your daily reality with CIDP. The energy required for simple tasks, the planning needed for basic movements, the way pain affects mood and patience – these become lived experiences rather than observed ones. It's a profound opportunity for deeper understanding and empathy.

You asked, "She can heal, that makes it different, or does it?" This question touches the heart of what makes relationships resilient during health challenges. Yes, your spouse's injury will heal in the medical sense, while your CIDP journey involves a different kind of healing – one of adaptation, growth, and finding wholeness within limitation. But here's the truth: both are valid. Both deserve care and attention.

What makes your situation truly special is the recognition that no one is ever truly independent. We're all interdependent; some of us just have more visible needs than others. Your household now embodies this principle completely. You're both vulnerable, both strong, both needing and providing care simultaneously.

This mutual vulnerability can be a powerful force for intimacy and trust in relationships. When you tend to their swollen ankle while they help you with tasks that CIDP makes challenging, you're creating something beautiful – a dance of mutual care that becomes an expression of love rather than obligation.

While initially disorienting, this role reversal offers unexpected gifts. Your spouse now understands more deeply the energy required to navigate physical limitations. You experience the helper's perspective more fully. There's a newfound appreciation for the differences between temporary and chronic conditions. And through it all, your partnership is strengthened. You're developing what researchers call "relationship immunity" – the ability to weather future storms because you've proven you can adapt together.

As you navigate this new terrain, here are some gentle reminders:

1. Honor both experiences. Your CIDP is real and ongoing. Their injury is real and temporary. Both deserve attention and care without comparison.

2. Embrace the awkwardness. Role reversals feel strange because they are strange. It's okay to fumble through figuring out new dynamics

💉 Treatment Spotlight: Riliprubart Phase 3 Trial Update
Riliprubart’s Phase 3 MOBILIZE (NCT06290141) and VITALIZE (NCT06290128) trials are testing complement inhibition in CIDP:

• Design: 24-week randomized, placebo-controlled phase followed by 24-week open-label extension

• Goals: Evaluate improvements in strength, quality of life, and fatigue, especially in refractory cases

• Progress: Sites in North/South America, Europe, and Asia are now recruiting; early biomarker data look promising

🗣️ Community Voices: Stories of Support

1. "The CIDP Cookbook": A nutritionist with CIDP created a cookbook full of easy-to-prepare, nutrient-rich recipes designed for people dealing with fatigue and limited mobility.

2. "Adaptive Yoga Classes": A yoga instructor whose sister has CIDP developed a series of adaptive yoga classes. These classes help patients improve flexibility and strength while managing symptoms.

❓ Ask the Expert: Finding Local Caregiver Resources
Q: Where can I find respite care or support groups near me?

I would consider the following resources:

1. GBS/CIDP Foundation International:

   • Visit their website (www.gbs-cidp.org)

   • Use their support group locator tool

   • Contact them directly for local resources

2. National Organization for Rare Disorders (NORD):

   • Check their website (rarediseases.org) for CIDP resources

   • They may have information on local support groups

3. Your neurologist or healthcare provider:

   • Ask for recommendations for local support groups or respite care services

4. Local hospitals or medical centers:

   • Many offer support groups for various conditions, including CIDP

5. Social media:

   • Look for CIDP support groups on Facebook or other platforms

   • These can be valuable for both online and local connections

6. Caregiver support organizations:

   • National Alliance for Caregiving (caregiving.org)

   • Family Caregiver Alliance (caregiver.org)

7. Local community centers or senior centers:

   • May offer respite care services or know of local resources

8. Your local Area Agency on Aging:

   • Can provide information on respite care and other support services

9. Online support communities:

   • PatientsLikeMe (patientslikeme.com)

   • Inspire (inspire.com)

10. State health departments:

    • May have resources or programs for people with chronic conditions

Remember to verify the credibility of any group or service before engaging. Your healthcare provider can also help ensure that any respite care service is appropriate for your specific needs.
Many hospital systems and home health agencies also offer respite programs. Your state’s Area Agency on Aging can help locate caregiver support services and training workshops.

🧰 Resource Corner: Tools, Groups, and Events

• GBS|CIDP Foundation International – Peer support, webinars, advocacy toolkits

• Vitaccess Real CIDP Registry – Sign up for longitudinal data collection on treatment impact

• CSL Hizentra Webinar – Learn about subcutaneous immunoglobulin administration

• Facebook Support Group – Private community for daily tips and emotional support

• Local Walk & Roll Events – Find challenges and meetups in your city

📅 Closing Thoughts & How to Get Involved

Take advantage of these newsletters if you can, ask questions, and share what works for you. Together, we’re building a stronger, more informed CIDP community.

Want to support Cidpedia?
Share this newsletter, consider a small donation, or send us your feedback. Every voice matters.

Stay strong, stay informed, and stay connected!

Warm regards,
Richard Aikman
Editor, CIDPedia

⚠️ Disclaimer

Stay strong, stay curious, and keep shuffling forward. 🌱