Denise: Nail Patella Syndrome
Nail Patella Syndrome is a painful condition that causes my bones and joints to weaken over time.
My name is Denise and I was born with a rare genetic disease called Nail Patella Syndrome. It’s so rare that most doctors don’t know of it, nor do many of them want to invest the time to know?!
It’s a degenerative condition, so as I get older my bones and joints begin to weaken. This means I am constantly battling pain throughout my body. Some days are hard to just move, or to even get out of bed.
I have a partial knee cap, which if I fall on…OMG! The pain is so intense! My elbows do not go straight or bend fully. So lifting heavy objects is a painful task.
As a child, I was luckier than others with NPS and as a result, I am healthier than others. I’ve never had any surgeries, or even broken a single bone. I’m 52 years old now and have many more years to live!
There are other medications available, but medical cannabis is the ONLY medicine that actually keeps me mostly pain free!! I also fear these other meds due to the high risk I have of kidney disease (also due to NPS).
I love my life, and I plan to live it to the fullest extent!!! NPS don’t stop me! (Yet).