Realness as Rare Disease Day Approaches - 31 Rubies Designs

Realness as Rare Disease Day Approaches

Hey, readers! (if I have any?)

As Rare Disease Day draws near (mark your calendars for Feb 29!), this is heavy on my mind - the incredible strength that binds us, those warriors facing the challenges of uncommon conditions. For me, it's not just a day on the calendar; its the day when this disease started attacking my body one year ago. It's the day after my dearest, beloved, beautiful sister suffered a devastating tragedy, also one year ago. It's an opportunity to share my journey with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and stand together in solidarity with those who live with similar conditions.

“Suck it up, it's all in your head” – Sound familiar? I get it. I've been there.

CIDP For Me: Navigating the Maze of a Rare Neurological Disorder

Living with CIDP is like navigating a maze of uncertainty. This rare neurological disorder severely damaged my peripheral nerves, causing extreme weakness, numbness, burning, major coordination issues, inability to lift my legs, amongst a host of other issues - including autonomic damage. I've even been accused of doing this for attention. It's not always easy, but I refuse to let the stigma surrounding rare conditions dull my spirit. Let's talk more about the bigger picture.

Beyond the Numbers: Understanding Rare Diseases

Ever wonder what truly defines a rare disease? It's not just a statistical rarity – it's an experience that shapes our lives. A rare disease affects fewer than 200,000 people in the US - or less than 65 people per 100,000 worldwide, according to the World Health Organization. Let's break down the barriers of misunderstanding and embrace the uniqueness of our journeys.

No Shame in Seeking Help: Embracing Vulnerability

To my fellow warriors, there's no shame in asking for help. It takes guts to confront the unknown, especially when few can truly understand. Whether it's a friendly face, a caring ear, or professional support – seeking help is a sign of strength, not weakness. Let's build a community that supports vulnerability and fosters understanding.

The Beacon in the Storm: Finding Strength in God

In times of weakness and struggle, I find relief, rest, and peace in my faith in God and our Lord and Savior, Jesus Christ. Embracing strength is an ongoing process, and when my reserves are low, I turn to Him. For me, God has been a constant source of strength and comfort. Remember, seeking help is not a sign of weakness but a testament to our resilience.

Rare Disease Day: Celebrating Triumphs, Acknowledging Struggles

As Rare Disease Day approaches, let's celebrate our victories, acknowledge our challenges, and stand united against the odds. Together, our voices can amplify awareness and pave the way for a world that has empathy towards and embraces those with rare conditions in love and out-going concern. Please, if you are willing, read 1 Corinthians 13 and pray for God to help you apply it to your own life.

So, my friends, as we step into Rare Disease Day, let's celebrate the small victories (no matter how small! One for me was brushing my own hair), lean on each other for support, and always remember – you are resilient, and in moments of need, our merciful God is there to guide you.

Sending you prayers of strength, hope, and camaraderie as Rare Disease Day approaches!


Until next time,
Devon Howard ❤️

Owner | Designer | Maker

P.S. My momma is the best.

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1 comment

I’ve got one on the list also, fibromyalgia, or, I don’t really know what it is but it’s autoimmune disease. And thank you for being soft and encouraging vulnerability. Many say ‘you’re so strong’ and I’d rather they not say that… I don’t want to have to be strong! Not all the time. Saying ‘I see you struggle but are still going and I admire that.’ Is less of a standard to live up to. For me at least. 🤍

Karah Youtsey

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