One Day at a time

Rare disease day is February 28, 2022. Who Knew? There is more than 300 million people worldwide living with a rare disease. This day is… Continue reading One Day at a time

As Unique as the syndrome, a young man first!

This is my son Noah, presently age 20. It took 18 years and many misdiagnosis and a lot of insistence and arguing, to win the… Continue reading As Unique as the syndrome, a young man first!

Always over reacting

In may of 2021 I had my first anaphylactic episode. I had no prior allergies and had never experienced anything like it before. We assumed… Continue reading Always over reacting

I survived a disease that should have killed me

I was diagnosed with the rare autoimmune disease (Wegener’s granulomatosis with polyangitis) known as GPA in 2009 at the age of 24. It almost took… Continue reading I survived a disease that should have killed me

Lipodystrophy is a Thief!

After poor health since a young age, and abnormal issues during my teenage and young adult years, then the heartbreak and struggle that comes with… Continue reading Lipodystrophy is a Thief!

I got pregnant – but I’m one of the few lucky

Morning all…… So in these groups we often hear the worst case scenario and while my story is still ongoing I believe it’s going “normal”… Continue reading I got pregnant – but I’m one of the few lucky

Living With BMD

I am one of 300 million people in the world living with a rare disease. I have Becker Muscular Dystrophy and was born missing exons… Continue reading Living With BMD

My Battle with Corneal Neuralgia

Finally a Diagnosis

Cassandra was born a healthy baby girl, it wasn’t until she was about 10 months old that she had her first seizure. It was from… Continue reading Finally a Diagnosis