🌟 Central Texas CIDP Newsletter

ALWAYS FRESH-Start your week empowered- updates, resources, and encouragement await!

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Table of Contents

1. Editor’s Note: The New Era in CIDP Care

2. Art & Healing: How Creativity Empowers CIDP Warriors

3. Feature Article: Take Control-Self-Injecting Vyvgart at Home

4. Understanding Your Diagnosis: It Makes Sense

5. Testing Breakthroughs: Smarter, Faster CIDP Diagnosis

6. Community Voices: Your Stories, Your Strength

7. Ask the Expert: Is Self-Injection Right for You?

8. Quick News: What’s Changing This Month

9. Closing Thoughts & How to Get Involved

10. Resources

✉️ Editor’s Note: The New Era in CIDP Care

Dear CIDPedia Community,

This week brings a wave of hope and independence for all of us living with CIDP. For years, we’ve dreamed of more control over our care, less time in clinics, and answers that come faster and clearer. Now, with new at-home treatments and diagnostic breakthroughs, that future is finally arriving.

Let’s dive into the latest news, practical tips, and ways you can take charge of your CIDP journey today.

🎨 Art & Healing: How Creativity Empowers CIDP Warriors

When you hear “art therapy,” you might picture someone painting a landscape or sketching with a pencil. But living with CIDP, you know that gripping a brush or pen isn’t always possible. The good news? Art is so much more than paint and paper-it’s any act of creation that lets your mind wander and your spirit breathe.

Maybe after your diagnosis, you struggled with the loss of fine motor skills. Your hands tremble, and on tough days, even holding a fork is a challenge. I find a mouse and keyboard QUITE challenging sometimes. It’s easy to think creativity is out of reach. But art, at its core, is about self-expression-not perfection or technique.

🎵 Music: Listen to music and let your mind paint pictures with sound.
🖍️ Doodle: Doodle or sketch with whatever tools you can manage.
📱 Digital Art: Try a digital art app that lets you “draw” with a fingertip or even your voice.
🗣️ Storytelling: Tell a story out loud, record a voice memo, or write a poem.
🖼️ Collage: Arrange colors and textures without needing to grip anything tightly.
📸 Photography: Take photos with your phone, focusing on light, shadow, or color.
🎤 Singing: Sing along to your favorite song, even softly.
🧩 Crafts: Arrange objects by color or shape-simple crafts count!
🎮 Games: Create digital worlds or stories in creative games.
👁️ Visualization: Close your eyes and imagine colors swirling, letting your mind create what your hands cannot.

Science backs you up: studies show that engaging with art-whether you’re making it, listening to it, or even just viewing it-can lower stress hormones, reduce pain perception, and improve mood. For people with chronic illness, art therapy helps manage anxiety, foster resilience, and spark moments of joy.

I use a keyboard and mouse to create my art now instead of a camera and a drawing pad. I use AI extensively and feel lucky to have it. Voice commanded AI is so much easier now that I can rest my hands while working. There are many free apps for making AI generated “art”. Try it or some of the other AI assisted apps for other types of art or relaxation.

BUT creating things like the art for this article with hands, paint and love gives pleasure. If YOUR art gives pleasure what more can we ask?

So-if you think art isn’t for you, think again. In those moments of creation, you reclaim a sense of control and possibility.

💉 Feature Article: Take Control-Self-Injecting Vyvgart at Home

If you’ve been following the CIDP world lately as closely as I have, you know we’re standing at the edge of a new era. For years, managing CIDP meant regular trips to infusion centers, waiting on slow diagnoses, and hoping for treatments that fit your unique case. But in just the past few months, the landscape has started to shift-fast. Not fast enough but we take what we can.

Vyvgart Hytrulo: Bringing Treatment Home

The FDA has just approved Vyvgart Hytrulo (efgartigimod alfa and hyaluronidase-qvfc) as a self-injectable therapy for CIDP. For the first time, many of us will have the option to treat at home, on our own schedule, with a prefilled syringe that takes just seconds to use.

What does this mean for you?

• Freedom: No more planning your life around clinic visits or waiting for an open infusion chair.

• Flexibility: Traveling, working, or just living your life becomes easier when you can self-administer your treatment.

• Empowerment: With proper training, you or a caregiver can take charge, with support from your healthcare team.

Early studies show that self-injection is just as safe and effective as traditional infusions, with most side effects being mild-mainly minor injection site reactions or mild infections. The real win is more control in your hands.

🧪 A Better Understanding: This article may sound a little techy but getting educated about your disease may help you in the long run.

Diagnosing Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) has always been challenging, but new advances are making the process faster and more precise. Traditionally, doctors relied on a combination of clinical evaluation, nerve conduction studies, and cerebrospinal fluid (CSF) analysis to confirm CIDP. These core tests remain essential, but the field is evolving.

A major development is the use of blood-based biomarkers. Researchers have identified specific antibodies-like NF155 and CNTN1-that help define CIDP subtypes. New blood tests can detect these markers, making it easier to personalize treatment, especially for those who don’t respond to standard therapies.

Advanced imaging, such as MRI and nerve ultrasound, is also reshaping diagnosis. These tools provide detailed views of nerve inflammation and damage, especially helpful in atypical cases or when standard nerve conduction studies are inconclusive.

Updated international guidelines now recognize the diversity of CIDP subtypes, helping clinicians distinguish between typical and variant forms, which is crucial for selecting the right treatment.

In summary, today’s CIDP diagnosis combines traditional exams with cutting-edge tests and imaging, leading to quicker, more accurate answers and truly individualized care for patients.

Look at some testing breakthroughs next…

🧪 Testing Breakthroughs: Smarter, Faster CIDP Diagnosis

Treatment is only half the story. Diagnosing CIDP has always been a challenge-symptoms vary, tests are complex, and misdiagnosis is common. That’s changing, too.

Here’s what’s new:
💪 Grip Strength Dynamometry: Doctors are now using handheld devices to measure grip strength, tracking changes over time to fine-tune treatment. This means less guesswork and more objective data.
🧬 Biomarker Blood Tests: Researchers are closing in on blood tests that can spot CIDP subtypes (like those with specific antibodies such as NF155 or CNTN1). This could soon help doctors predict which treatments will work best for you.
🖥️ Advanced Imaging: MRI and nerve ultrasound are now being used to actually see nerve inflammation and damage, making diagnosis faster and more reliable-especially in tricky cases.

With these innovations, your CIDP journey can be more personalized than ever. But how do these changes feel in real life? Let’s hear from our community…

🗣️ Community Voices: Your Stories, Your Strength

One of the greatest strengths of the CIDP community is the way we lift each other up by sharing our stories. Each journey with CIDP is unique-some of us faced years of uncertainty before diagnosis, while others found answers quickly but still had to adapt to a new reality. What unites us is our willingness to reach out, support, and inspire one another.

Take Maria, who discovered poetry as a way to process her emotions after losing fine motor control. She writes, “I can’t hold a brush anymore, but I use a speech-to-text app to write poetry. It helps me process my feelings and gives me something to look forward to each day.” Or James, who finds solace in photography: “I look for beauty in small things-a flower, the sky, my dog’s smile. It reminds me there’s always something worth noticing.”

When you share your story-whether it’s a triumph, a struggle, or a creative breakthrough-you remind others that they’re not alone. Your experience could be the encouragement someone else needs to keep going. If you have a story, tip, or piece of art to share, reply to this newsletter. Together, our voices create a chorus of hope and resilience.

Now, let’s get expert advice on these new developments…

🧑‍⚕️ Ask the Expert: Is Self-Injection Right for You?

Q: “Is self-injection safe for everyone?”
A: Dr. Lisa Nguyen, Neurologist:
“Self-injection is safe for most patients with CIDP, provided you receive proper training and have support from your care team. Always report any unusual side effects, and don’t hesitate to ask for a refresher on technique if you need it.”

Q: How do I cope with the emotional ups and downs of living with CIDP?
A: It’s normal to feel a range of emotions, from frustration to grief to hope. Consider talking to a mental health professional familiar with chronic illness. Practice self-care: meditation, mindfulness, or journaling can help. Stay connected with supportive people-whether friends, family, or online communities. Remember, asking for help is a sign of strength, not weakness.

As you consider these new options, it’s also important to know what resources and support are available…

📰 Quick News & Links: What’s Changing This Month

• 🏥 FDA Approves Vyvgart Hytrulo for CIDP:
  The FDA has approved a self-injectable option, giving patients more flexibility.
  Read more

• 💪 Dynamometry for CIDP Progress Tracking:
  New grip strength tools are making it easier to track disease activity and adjust treatment.
  Learn more

• 🧬 CIDP Biomarker Research:
  Blood tests for CIDP subtypes are on the horizon, paving the way for personalized medicine.
  Details here

📅 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

📚 Resources VERIFIED MAY 2025

1. https://argenx.com/news/2024/argenx-announces-fda-approval-of-vyvgart-hytrulo-prefilled-syrin

2. https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-treatment-chronic-inflammatory-demyelinating-polyneuropathy-cidp-adults

3. https://www.rarediseaseadvisor.com/news/dynamometry-improve-cidp-testing-treatment/

4. https://www.medpagetoday.com/spotlight/aan-cidp/110382

5. https://www.vyvgart.com/vyvgarthytrulo-cidp/about-self-injection

6. https://mcpress.mayoclinic.org/cidp/cidp-new-tests-that-help-diagnose-this-rare-condition/

7. https://www.gbs-cidp.org/