My journey with autoimmune primary adrenal insufficiency (Addison’s disease) began more than half a lifetime ago, when I was about 19. As a result, many… Continue reading My journey with Addison’s Disease
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I was born with a congenital rare disease called “Septo-Optic Dysplasia”, which caused further complications with diagnostic names that are just as long and complicated.… Continue reading Learning to Advocate as a Patient
My daughter, Saige Elizabeth, has a rare condition called Nonketotic Hyperglycinemia (NKH). This is her story. SAIGE’S STORY Saige was born July 30, 2010, a… Continue reading Saige’s story
It’s More Than Skin, no matter how unique our outer appearance may be, it is our innermost self that shines brightest and defines our legacy. … Continue reading It’s More Than Skin: Living with EB
I guess I’ll start from the beginning for me. I went to bed one weekend night but was woken up abruptly shortly after feeling a… Continue reading The headache that changed my life
I was diagnosed a week after my 14th Birthday. I had been suffering with terrible headaches 24/7 for a year after being unable to keep… Continue reading A young person’s journey through IIH
This is our happy, spunky, warrior baby, Ryan!!! He turned one in November with 6 surgeries under his belt!! While being completely fine in the womb,… Continue reading Ryan’s Journey with VACTERL syndrome.
It’s funny, from the time Pierce was born I knew something just wasn’t right, but I brushed it off as “this is just what it’s… Continue reading A Legend is Born
Rare diseases: corneal neuralgia, ocular neuropathic pain, Meesmanns dystrophy, corneal dystrophy, Sjogren’s syndrome Something changed in my 30’s, it started slowly. I had worked with… Continue reading Fighting for my eyes, fighting to be seen