Anyone living with Kallmann syndrome (KS) faces multiple symptoms: no sense of smell delayed puberty possible infertility complications affecting the kidneys, ears, heart, eyes, and parts of the brain Patients…
When that moment happened, and again I don’t know when it happened, but when that moment in my head just clicked and I stopped being, or stopped putting myself in…
For so many people, hearing the word "normal" come out of a doctor's mouth can be comforting. But for Chloe Christos, now 27 and diagnosed with von Willebrand disease (vWD), this…
It was a match made in heaven when the Homecoming King fell in love with the Homecoming Queen. Several years after they accepted their crowns, they got married and planned…
Miracles never cease to amaze me. And quite frankly, it’s been a long time since I’ve been convinced that one actually has happened—although in theory, I welcome miracles every day!…
Being a parent is tough. We never know if we’re on the right track. Too many thoughts of self-criticism come to mind: Am I doing this right? Do I practice…
Life is one wild ride, isn’t it? The greatest surprises of life may be just around the corner. My life was changed by one little red radio flyer wagon. An…
Pediatric ulcerative colitis is an inflammation of the lining of the colon and rectum. The inflammation can wear away the lining, causing ulcers to form, and patients suffer from chronic…
Recently, a friend shared her concern for a colleague whose child is suffering from a rare disease called Muckle Wells Syndrome (MWS), a form of Cryopyrin-associated-periodic-syndrome (CAPS). The story prompted…
2016 has been a very bizarre, upsetting year. As an American, I can’t wait until I can bury most everything about 2016 in the back corner of the history books.…
Lora Rossi once had a vibrant, active life. She spent her summer days at the beach with friends, she had a job she really enjoyed, and her future looked bright.…
Legend has it that Archimedes once ran through the streets of Syracuse naked yelling, “Eureka!” because he had discovered an amazing scientific principle. (BTW, if you're thinking, "What on earth…
After talking on the phone with some of my family members, I felt a range of emotions from anger and frustration to guilt and sadness. It breaks my heart because…
I’ve gotta hand it to this German gal named Karina, who posted an article about her journey living with Ehlers-Danlos syndrome (EDS), a chronic illness that affects connective tissues in areas…
Every now and then, I read a story that reminds me of the power of perseverance and a families love. "Mom, it's too late. I'm dying" is one of those stories. From the…
I have to admit that I had tunnel vision when it comes to patient advocacy. I naively thought that everyone was direct and honest with their doctors. I believed that…
Hello I’m Kara, a woman who was finally, properly diagnosed 10 years ago with acromegaly. I still deal with residual issues that started 20 years ago on a daily basis. …
For decades, Venus Williams has been a powerhouse in the world of tennis. Since becoming pro in 1994, she has won 7 Grand Slam Singles titles and was formerly ranked No.…
My dad went from playing basketball three times a week at the local YMCA to not being able to climb the stairs to bed. And for two years, the doctors…
Keenan Cahill is a YouTube sensation who just happens to have Maroteaux-Lamy syndrome. Although, after watching his channel for a half hour, he isn't letting it hold him back from…
One of the (many) issues with having Behcet's disease is that very few of the medications we use on a daily basis have ever been studied in people with our…
Chronic granulomatous disease (CGD) is a genetic condition that affects the immune system. It's in the family of primary immuno-deficiencies, and makes it hard for the body to fight infections…
Suspect You May Have Cushing’s Disease? Read On Now! If you suspect that you might have Cushing’s disease because you have some of the following symptoms, you DEFINITELY need to…
During one of those “dog days of summer,” I was searching around for some inspiration; I’d been feeling blue because a friend of mine, who is in her 50s and…
The human body is a magnificent machine, and each cell has a role to play. In a way, it's like a jigsaw puzzle that ordinarily is put together perfectly. The only…
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