Elevated Zebras for Rare Disease
A Rare Swiftie's Musings on The Tortured Poet's Department: The Anthology
The Biggest Lesson I’ve Learned with a Rare Disease Diagnosis
Rare Disease Week Recap on Capitol Hill 2024
5 Ways to Celebrate Rare Disease Day
Living with a rare disease is not easy. Here is how and why you should celebrate rare disease day!
Last-minute Amazon gifts for Loved Ones with a Rare Disease
Gift ideas for those with a rare disease
Surviving the Holidays with a Rare Disease or Chronic Illness
Tips for Living Alone with a Rare Disease or Chronic Illness
Living Alone with a Rare Disease or Chronic Illness. Here are my tips and ways I have made my life a little easier.
What I Wish I Did the Day After I was Diagnosed with a Rare Disease
After my rare disease diagnosis, Friedreich’s Ataxia (FA), I was definitely not my best self. Here are the things I wish I had done to take baby steps to practice self-love and acceptance. Hopefully what I’ve after my rare disease diagnosis can help you on your health journey.
The Importance of Self-Care for Women with Rare Disease, Chronic Illness, or Disabilities
As women, we often put the needs of others before our own. This is especially true for women with rare disease, chronic illness, or disabilities; we have counless additional challenges and responsibilities to manage.
However, taking care of ourselves is essential for our physical, mental, and emotional well-being. In this blog post, we will explore the importance of self-care for women with disabilities and provide practical tips for incorporating self-care into your daily routine.
Morning Routine
Living with a rare disease has shown me the importance of focusing on my health and wellness. Here is my ideal morning routine:
My Diagnosis Story
Overall, I'd want to think that my time in high school was typical, but I believe that deep down I knew something was very wrong. Then, in May 2011, in a dimly lit doctor’s office, weeks after genetic testing, a white-haired doctor gave my dad and me the news. I had a rare disease, called Friedreich’s ataxia. My dad was expecting it. He let out a sigh and assured the doctor he would explain it to me.
Chasing My Why
Changing career paths due to a rare disease diagnosis is not easy. I was diagnosed with Friedreich’s Ataxia and my expectations crumbled. It took time but I’ve learned I’m exactly where I need to be.
Social Media & Chronic Illness/ Disability
The Comparison Game