About me

I’m a 56 year old woman living in New Zealand. I was diagnosed with Pompe disease almost 11 years ago at age 45 after more than 20 years of misdiagnoses and failure to diagnose Pompe disease. I am married with 3 sons, ages 33, 19 and 17. Just one is still living at home. I like to keep myself busy with crafts like crochet, soap making and painting furniture. We have lots of animals including 15 cats and 5 horses, lots of chickens and a cow.

Signs & Symptoms

Weakness in my legs. Waddling gait and an arched back (lordosis). Burning and aching in my calf muscles, but general pain thoughout my whole body as well. Headaches, muscle twitches. Gastro intestinal “issues”. Trunk weakness. Trouble walking with very bad balance. Shortness of breath. Difficulty climbing stairs, getting up from a chair and not being able to get up off the ground.

Symptoms started at 13
Diagnosed at 45

“I would really love to be able to ride my horse again!”

Tagged: Awareness, portraits