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Table of Contents

1. Editor’s Perspective: The Power of Small Victories

2. CIDP News & Research: New Trials, New Hope

3. Feature Article: Summer Travel with CIDP—A Real-World Guide

4. Treatment Spotlight: Subcutaneous Immunoglobulin (SCIg)

5. Living Well: Staying Active in the Heat

6. Community Voices: Your Stories, Your Strength

7. Ask the Expert: Navigating Insurance Changes

8. Resource Corner: Tools & Support

9. Disclaimer

✉️ Editor’s Perspective: The Power of Small Victories
This summer, I’m reminded that progress with CIDP is often measured in small victories. Whether it’s a new treatment option, a helpful tip from a fellow patient, or simply making it through a tough day, each step forward counts. As we bring you the latest in CIDP research and real-life stories, I invite you to celebrate your own wins—no matter how small.

🚨 CIDP News & Research: New Trials, New Hope
The world of CIDP treatment continues to evolve. Several promising clinical trials are underway, including the MOBILIZE and VITALIZE studies for riliprubart, a complement inhibitor being explored for patients who have not responded to standard therapies¹. Early results suggest improved grip strength and reduced relapse rates for some participants.

Meanwhile, researchers are tracking the effectiveness of next-generation FcRn inhibitors, like batoclimab and rozanolixizumab, which may offer alternatives for those who don’t benefit from IVIg or steroids². The future is bright—and we’ll keep you updated as new data emerges.

🌴 Feature Article: Summer Travel with CIDP—A Real-World Guide

For many living with CIDP, the idea of summer travel brings a mix of excitement and anxiety. The urge to reconnect with family, see new places, or simply break the routine is strong—but so are the worries: Will I have a flare? What if I need treatment on the road? Can I really enjoy a trip with all these unknowns?

After nine years with CIDP and dozens of journeys both near and far, I’ve learned that travel is possible—and even joyful—if you plan ahead and give yourself plenty of “I did not plan on that” time. ENERGY, keep a little of that in your gas tank or do you want to ride the luggage cart up to the Hotel room?

Start with the Right Mindset
Traveling with CIDP isn’t about pretending you’re not sick. It’s about knowing your limits, preparing for bumps in the road, and focusing on what matters most. I always remind myself every trip is a victory, no matter how small. Some have been I don’t want to go home and some have been I can’t wait to get home.

Plan, Prepare, and Communicate
The best trips start weeks before you leave. Talk to your doctor about your travel plans, especially if you’re due for an infusion or medication refill. Ask for a travel letter explaining your diagnosis and treatments; this can smooth things over with airport security or in case of emergencies³.

Book accessible accommodations and request ground-floor rooms or elevators if stairs are tough. If you use mobility aids, call hotels and airlines in advance to confirm they can accommodate your needs. Many airlines offer wheelchair assistance from curb to gate—don’t hesitate to ask.

Pack Smart and Light
Medications come first. Pack more than you need, split doses between carry-on and checked bags, and carry a copy of your prescriptions. Bring a small cooler or insulated bag if your medication requires refrigeration.Always include a list of doctors’ phone numbers and a summary of my medical history.

For infusions, check with your healthcare provider about options for receiving treatment at your destination. Some infusion centers welcome travelers with advance notice, and home infusion companies may be able to coordinate care across state lines.

Hydration and Nutrition
Travel can dehydrate you, especially in hot climates or on long flights. Bring a refillable water bottle, and sip regularly. Choose snacks that are easy on your stomach and high in protein or complex carbs—nuts, cheese, and granola bars are my go-to.

Pacing and Flexibility
The most important lesson learned? Build in rest. Don’t over schedule your days. Plan one main activity, then leave room for downtime. If you need to cancel plans or take a nap, do it—your health comes first.

On the Road: Tips for Every Step

• Airport: Arrive early, use wheelchair assistance if needed, and let TSA know about any medical devices or supplies.

• Car travel: Stop every 1–2 hours to stretch and move. Bring a pillow or seat cushion for comfort.

• Hotels: Ask for a room near the elevator or lobby. Unpack medications and set up your “treatment station” right away.

Dealing with Setbacks
Even with the best planning, things can go wrong. Flights get delayed, medications get lost, or symptoms flare unexpectedly. When this happens, remember: you are resilient. Reach out for help—hotel staff, local pharmacies, and patient support groups can be invaluable.

Finding Joy in the Journey
Some of the best travel memories come from unexpected moments—a quiet sunrise on a hotel balcony, a friendly chat with a stranger who noticed your cane, or simply the pride of making it through a long day. Travel may look different with CIDP, but it’s still worth it.

Remember, every journey is unique. With preparation, flexibility, and a sense of humor, you can make this summer your own adventure.

☀️ Living Well: Staying Active in the Heat
Summer heat can worsen fatigue and nerve symptoms. Try these tips:

• Exercise early or late in the day

• Wear loose, breathable clothing

• Use cooling towels or vests

• Listen to your body—rest when needed

  
  For more, see AmeriPharma’s CIDP resources⁷.

💉 Treatment Spotlight: Subcutaneous Immunoglobulin (SCIg)
For many with CIDP, regular infusions are a fact of life. But now, more patients are switching to SCIg therapy at home⁷. SCIg offers flexibility, fewer clinic visits, and steady antibody levels. Patients report greater independence and less disruption to daily routines. If you’re considering this switch, talk to your neurologist about training and support options.

🗣️ Community Voices: Your Stories, Your Strength
This month, Maria R. in Central Texas shares:

❓ Ask the Expert: Navigating Insurance Changes
Q: “My insurance changed, and my treatment was delayed. What can I do?”
A: Insurance changes are a common challenge. Start by contacting your neurologist’s office—they often have staff who can help with prior authorizations. If you face denials, appeal in writing and include a letter from your doctor explaining why your treatment is medically necessary. For more guidance, see GBS|CIDP Foundation’s insurance help⁸.

🧰 Resource Corner: Tools & Support

1. Rare Disease Advisor. New study to test potential CIDP treatment opens. 2025.

2. NeurologyLive. Treatment options in CIDP. 2025.

3. GBS|CIDP Foundation International. Travel letter template. 2025.

4. Shining Through CIDP. CIDP travel tips. 2025.

5. GBS|CIDP Foundation International. Traveling with CIDP. 2025.

6. TSA. TSA Cares: Medical support. 2025.

7. AmeriPharma. IVIG for CIDP. 2025.

8. GBS|CIDP Foundation International. Insurance navigation resource. 2025.

1. https://cpi-pain.com/travel-tips-for-chronic-pain-patients-enjoying-a-pain-free-summer-vacation/

2. https://www.gbs-cidp.org/2023/09/tips-and-tricks-for-traveling/

3. https://altusbiologics.com/summer-travel-tips-for-chronic-disease-patients/

4. https://ivxhealth.com/blog/summer-travel-tips-chronic-illness/

5. https://altusbiologics.com/10-summer-travel-considerations-for-chronic-disease-patients/

6. https://www.gbs-cidp.org/wp-content/uploads/2020/09/Your-Guide-to-Caring-for-Someone-with-CIDP.pdf

7. https://www.columbiadoctors.org/news/how-travel-chronic-condition

8. https://www.urgiclinic.com/the-ultimate-checklist-for-healthy-summer-travel-10-essential-tips

9. https://www.shiningthroughcidp.com/content/dam/shining-thru-cidp/forms/gated-pdf/Mobility-Tips-From-the-CIDP-Community.pdf

10. https://neurologyoffice.com/smart-summer-travel-health-tips-from-a-neurologist/

📅 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.

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Stay strong, stay informed, and stay connected!

Warm regards,
Richard Aikman
Editor, CIDPedia

⚠️ Disclaimer

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