Finding Joy in the Rare LifeIt is hard to remember what my life was like before having a child with a rare disease. I became the caregiver of my firstborn son when I was still...Bookmark for later
How Persistence and Medical Partnership Impacts DiagnosisI am a complicated rare disease patient. Not only do I have 2 rare diseases and am potentially developing a third, but whenever I have a new medical condition, it...Bookmark for later
Finding Joy in the Rare LifeIt is hard to remember what my life was like before having a child with a rare disease. I became the caregiver of my firstborn son when I was still...Bookmark for later
How Persistence and Medical Partnership Impacts DiagnosisI am a complicated rare disease patient. Not only do I have 2 rare diseases and am potentially developing a third, but whenever I have a new medical condition, it...Bookmark for later
Finding Joy in the Rare LifeIt is hard to remember what my life was like before having a child with a rare disease. I became the caregiver of my firstborn son when I was still...Bookmark for later
How Persistence and Medical Partnership Impacts DiagnosisI am a complicated rare disease patient. Not only do I have 2 rare diseases and am potentially developing a third, but whenever I have a new medical condition, it...Bookmark for later
How to Care for Someone With Congenital Adrenal HyperplasiaCaring for someone with congenital adrenal hyperplasia (CAH) is difficult. A CAH diagnosis can feel overwhelming since it is a lifelong genetic condition without a cure. But with the right...Bookmark for later
Embracing Mindfulness: 31 Affirmations for Rare Disease CaregiversReflecting on the past year, I realize that last year was a test of self-discovery, leading me down a path I never thought I would tread. It was the year...Bookmark for later
Living With Congenital Adrenal HyperplasiaLiving with a genetic condition like congenital adrenal hyperplasia (CAH) can pose unique challenges. But CAH does not have to define a person’s life. With the right treatment plan, most...Bookmark for later
Understanding Congenital Adrenal HyperplasiaCongenital adrenal hyperplasia (CAH) is a group of rare genetic disorders that affect the adrenal glands. The adrenal glands are 2 walnut-sized organs located above the kidneys. They produce essential...Bookmark for later
3 Ways You Can Help a Rare Disease CaregiverI am not going to lie and say that being a rare disease parent is easy. It is often a challenge for me to get through the day. I feel...Bookmark for later
20 Essential Self-care Practices for Rare Disease Caregivers: My Journey to ResilienceBeing a caregiver for someone with a rare disease is an incredibly rewarding yet demanding role. Learning how to advocate for my daughter gave me a sense of purpose and...Bookmark for later
