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the hidden disease

I was unaware of my Behçet’s and had accepted constant illness was simply my lot in life. The GPs were useless with comments like “you… Continue reading the hidden disease

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TERRIBLE VALENTINE’S DAY PRESENT

MY HUSBAND AND I WERE SO EXCITED TO BE GOING ON OUR VERY FIRST CRUISE FOR VALENTINE’S DAY 14 YEARS AGO. WHILE GETTING SUIT CASES… Continue reading TERRIBLE VALENTINE’S DAY PRESENT

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I had know idea!

Lucy had suffered with sinus infections and profound fatigue for over 18 months, multiple courses of antibiotics with small little breaks in feeling sick. She… Continue reading I had know idea!

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“My Roller Coster Ride though Mito”

For most people riding roller coasters are fun, but when you have mito it’s a challenge. At age 16, I started my journey. I was… Continue reading “My Roller Coster Ride though Mito”

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Team CMT

I have CHarcot Marie Tooth, an inherited never disorder. When I was diagnosed I did not think it was right that no one had ever… Continue reading Team CMT

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My Dandy-Lion

My daughter is the sunshine to my everyday. She was diagnosed at 25 wks gestation with Dandy Walker Syndrome. The doctors said she may or… Continue reading My Dandy-Lion

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A rogue gene!

I first went to my GP around 4-5 years ago about issues I was having walking upstairs, I also had lost the ability to stand… Continue reading A rogue gene!

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Kallmann Syndrome – Failure to start puberty.

Hello, I have a rare condition called Kallmann Syndrome, also known as congenital hypogonadotropic hypogonadism (CHH). The primary symptom is a failure to start puberty… Continue reading Kallmann Syndrome – Failure to start puberty.

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One in a Million Odds: Living with Stiff Person Syndrome

Just over four years ago, I was diagnosed with a rare neuromuscular disease. In truth, it took a frustratingly-long eleven years of research, progressing symptoms,… Continue reading One in a Million Odds: Living with Stiff Person Syndrome

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