Amy Grover

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A Wife? A Mother? What Was Possible With a Diagnosis of Congenital Adrenal Hyperplasia?
I am a 37-year-old wife and mother of three handsome boys and I have a disease called Congenital Adrenal Hyperplasia (CAH) with salt… Continue Reading
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A Challenge Met With Strength: Kaeden Doesn’t Let Congenital Eye Disease Take His Freedom
by Nadia Turki Kaeden is my son. He was born blind with a condition called Bilateral Peters Anomaly. He has had 39 surgical procedures on… Continue Reading
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A Diagnosis of Primary Immune Deficiency Disease: What Took So Long?
by Betty Filippelli-Gordon I fell sick at age four, the cause of which, we assumed was a leak in a sewer pipe that traveled through my… Continue Reading
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The PHight or Flight Project: How The Voice of One Pulmonary Hypertension Patient is Inspiring Others
by Serena Lawrence In October of 2013 I started to notice that I had some shortness of breath. At first, I just assumed it was seasonal… Continue Reading
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Life In Stripes Podcast: a CVID Story
My son and I both have CVID. We have low immune systems and it makes it very easy for us to get infections. We get sick a lot. It has caused… Continue Reading
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Twice Blessed? Two Rare Diseases in One Lifetime?
When I was two years old, I was diagnosed with Coats Disease, which resulted in the removal of my left eye. When I was 40, I went in to see… Continue Reading
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Hallermann Strieff Syndrome: 32 Surgeries for 14-year-old Boy
My son, Devin, is 14-years-old. Devin had his first surgery when he was just 6-months-old and we stayed in the hospital for 46 long days in… Continue Reading
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