I learned early that CIDP and open toed shoes or bare feet resulted in broken toes (which don’t really hurt, just an annoying buzzing) from immovable objects being in the way of my feet.

Pretty obvious if you think about it and like most people afflicted with this type of disease, I don’t always know where my feet are.

Living in Texas is prime sandal weather and BBQ weather…also biting stinging bug country.

Well, after multiple ant encounters and a quarter sized blister on my big toe from B-B-Qing (don’t ask and didn’t feel that one either) I learned to keep em covered!

WHAT’S IMPORTANT: NEW CIDP TREATMENT APPROVED

Big news for our CIDP community! The FDA has just approved a groundbreaking new treatment option - Vyvgart Hytrulo (efgartigimod alfa and hyaluronidase-qvfc).

What Makes This Special? • First new CIDP treatment in over 30 years • Once-weekly subcutaneous injection • Takes only 30-90 seconds to administer • First of its kind to block specific receptors (FcRn)

The Research Behind It: The ADHERE study showed impressive results: • 61% reduced risk of relapse compared to placebo • 67% of patients showed improvement • Benefits seen across different patient groups • Consistent safety profile

What This Means For You: • New alternative to traditional treatments • Potentially easier administration • More treatment options to discuss with your doctor • Available through specialty pharmacies

Official Sources: FDA Announcement: www.fda.gov/news-events 

Argenx Information: https://us.argenx.com/

Important Note: Always consult your healthcare team about treatment options. This information is for awareness only.

[Information sourced from FDA approval documents and clinical trial data, June 21, 2024]

Remember: New treatments offer hope, but decisions should always be made with your healthcare team! 🌟

SHOES- A Good Foundation

Let's talk about something we don't talk about enough - our relationship with shoes. As someone who's navigated CIDP for close to a decade, I've learned that stability starts from the ground up.

Remember when footwear was just about style? Those days might be behind us, but that doesn't mean we can't still step out confidently - we just need to be more particular about our choices.

The Science Behind the Steps 🏥 According to recent medical research, proper footwear can reduce our fall risk by a whopping 60%. But what makes a shoe "proper" for us CIDP folks?

Think of it like building a solid foundation: • A stable, wide base • Strong ankle support • Reliable cushioning • Plenty of room to move • Non-slip surfaces for safety

Personal Experience "I remember trying to cross my kitchen in my old favorite shoes," I'll admit with a smile. "Let's just say my pride took a bigger hit than my hip. That was the day I learned that sometimes loving your feet means changing your shoes."

What to Look For:

1. Wider bases for stability

2. Firm ankle support

3. Non-slip, grippy soles

4. Extra depth for orthotics

The Good News Today's therapeutic footwear has come a long way. Modern options look right at home in any casual or semi-formal setting, without screaming "medical shoe."

The game-changer was when I stopped fighting what my feet needed. Now I can focus on living life instead of watching every step.

Making the Transition Start slow: Try different styles at home first. Remember, this isn't about giving up your style - it's about adapting it to keep you moving safely and confidently.

MEDICAL RESEARCH FOUNDATION:

1. National Institute of Neurological Disorders https://www.ninds.nih.gov/ • Comprehensive guide on neuropathy and balance • Section on footwear importance • Updated research findings

2. American Academy of Physical Medicine and Rehabilitationhttps://www.aapmr.org/about-physiatry • Specific footwear recommendations • Fall prevention strategies • Balance improvement techniques

PRACTICAL RESOURCES:

3. Pedorthic Association of Canada https://pedorthic.ca/ • Detailed shoe fitting guide • Features to look for • Professional measurement tips

4. Foundation for Peripheral Neuropathy https://www.foundationforpn.org • Balance exercise recommendations • Footwear safety guidelines • Activity modifications

Note: All links verified as of January 2024. Some may require free registration to access full content.

🌙 4 AM WITH CIDP

The old house creaks differently at 4 AM. That's something you learn when CIDP keeps you company through the dark hours.

My feet, always unreliable witnesses these days, tell me strange stories about the hardwood floor beneath them. Sometimes they report nothing at all, as if I'm floating. Other times, they send urgent messages about phantom textures that aren't really there. CIDP plays these tricks, turning simple midnight walks into adventures in trust and balance.

The kitchen light casts a pale glow across the counter where tomorrow's medications stand in neat rows, like tiny soldiers waiting for morning orders. I remember when I could grip a glass without thinking, when my fingers didn't need to be convinced to cooperate. Now, even the simple act of reaching for water becomes a deliberate dance.

In these quiet hours, when the world sleeps and pain keeps me wandering, I've learned to find peace in the solitude. The numbness in my hands might make holding a book a challenge, but it can't stop the memories of pages turned or the stories held within. My unsteady legs might protest each step, but they can't erase the memory of dances danced or paths walked.

The first hint of dawn peeks through the window. Soon, the world will wake, and the house will fill with the usual sounds of life. But for now, in this gentle darkness, it's just me and CIDP, two old adversaries sharing another quiet night, waiting for the sun to rise on another day of possibilities.

Some battles are fought in bright daylight with cheering crowds. Others, like this one, are fought in dark quiet houses at 4 AM, one step at a time.

YOU GOTTA HAVE ONE

LED-LIT WALKING CANES

Night-time navigation just got brighter! LED-lit walking aids aren't just fancy gadgets – they're game-changers for those midnight trips to the bathroom or evening walks.

These smart devices feature: • Path illumination • Battery-efficient LEDs • Easy-to-find in darkness • Added safety features

It's like having a built-in nightlight that moves with you. No more fumbling for light switches or worrying about unseen obstacles.

Remember: Safety shouldn't stop when the sun goes down!

Just a different set of wheels.

Adaptability is important with this disease. You have to learn how to adapt. You want to continue your life. You want to do the things that other people are doing. There's nothing stopping you, it's just doing it differently.

  BE NICE, I know it’s hard.

PERSONAL EXPERIENCE DISCLAIMER 📝

Let's get something important out in the open:I AM NOT A DOCTOR and I AM NOT GIVING ADVICE!

Everything I share comes from my personal journey living with CIDP. While I've walked this path for a number of years, please remember:

"This newsletter 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."

Remember: This newsletter is like a friendly chat over the fence - informative and supportive, but not a replacement for professional medical care! 🏥