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
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
Starting a Family When You Have Congenital Adrenal HyperplasiaCongenital adrenal hyperplasia (CAH) is a genetic condition that can affect people of any sex. This is a rare condition that can require lifelong treatment. If you or your partner...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
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
Transitioning to Adult Care With Congenital Adrenal HyperplasiaCongenital adrenal hyperplasia (CAH) is a lifelong condition that affects the adrenal glands, causing hormonal imbalances. For those with CAH, moving from pediatric to adult medical care is critical. But...Bookmark for later
