Over the years, I’ve been asked countless questions about Crohn’s Disease, Myasthenia Gravis, chronic illness, treatments, and how I continue navigating life while managing multiple autoimmune diseases.
This page answers some of the questions I hear most often.
Please remember that I am sharing my personal experiences and not medical advice. Every patient’s journey is unique.
What is Crohn’s Disease?
Crohn’s Disease is a chronic inflammatory bowel disease (IBD) that causes inflammation in the digestive tract.
While many people think Crohn’s only affects the stomach, it can impact the entire body and often causes fatigue, pain, nutritional deficiencies, and complications beyond the digestive system.
I was diagnosed with Crohn’s Disease in 2003 at the age of 26.
What is Myasthenia Gravis?
Myasthenia Gravis (MG) is a rare autoimmune neuromuscular disease that causes muscle weakness.
MG affects communication between nerves and muscles, leading to symptoms such as:
- Muscle weakness
- Fatigue
- Difficulty swallowing
- Double vision
- Difficulty speaking
- Breathing problems
I have MuSK-positive Myasthenia Gravis, a rarer subtype of MG.
What does MuSK-positive mean?
MuSK stands for Muscle-Specific Kinase.
In MuSK-positive MG, the immune system attacks proteins involved in communication between nerves and muscles.
Many MuSK patients experience significant weakness affecting speech, swallowing, breathing, and neck muscles.
My respiratory symptoms were among the most significant symptoms that ultimately led to my diagnosis.
Why did it take so long to get diagnosed?
Like many people with rare diseases, I spent more than three years searching for answers.
I saw multiple specialists, underwent numerous tests, and often left appointments feeling frustrated because I knew something was wrong even when answers weren’t immediately available.
Receiving a diagnosis was both emotional and validating.
What is Rystiggo?
Rystiggo is a treatment approved for certain types of Myasthenia Gravis, including MuSK-positive MG.
Since beginning treatment, I have experienced significant improvements in my breathing and overall quality of life.
While it is not a cure, it has been an important part of my treatment journey.
Why do you still work?
This is probably one of the questions I am asked most often.
The answer is simple:
Because I can.
There may come a day when that changes, but today I continue to work because my career gives me purpose, fulfillment, connection, and a sense of normalcy.
Working while managing chronic illness isn’t always easy, but it remains an important part of my life.
What is the hardest part of living with chronic illness?
The answer changes depending on the day.
Sometimes it’s the fatigue.
Sometimes it’s the uncertainty.
Sometimes it’s grieving the things illness has changed.
But one of the hardest parts is that chronic illness never truly takes a day off.
Even on the good days, it’s still there.
Why did you start The Dual Diagnosis Diaries?
I created this blog because I know how lonely chronic illness can feel.
After spending years searching for answers and navigating life with Crohn’s Disease and Myasthenia Gravis, I wanted to create a space where others could find:
- Understanding
- Education
- Encouragement
- Hope
- Community
Most importantly, I wanted others to know they are not alone.
What do you hope readers take away from your blog?
I hope readers leave feeling:
Seen.
Heard.
Understood.
Empowered.
And reminded that a diagnosis may change your life, but it does not define your worth.
You are more than your diagnosis.
Can I contact you?
Absolutely.
One of the reasons I created The Dual Diagnosis Diaries was to connect with others navigating similar journeys.
Whether you’re newly diagnosed, a caregiver, a fellow patient, or simply someone looking to learn more, I’d love to hear from you.
Visit the “Stories, Support & Connection” page to reach out.
Final Thoughts
If there’s one thing I hope you remember after visiting this page, it’s this:
Living with chronic illness can feel isolating.
But you don’t have to walk this journey alone.
Thank you for being here and for being part of The Dual Diagnosis Diaries.
— Kia
Founder, The Dual Diagnosis Diaries
Educating. Advocating. Inspiring. One story at a time.
The Dual Diagnosis Diaries | Kia’s Journey 💜 