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Denise: Nail Patella Syndrome

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Nail Patella Syndrome is a painful condition that causes my bones and joints to weaken over time.

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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).

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    elizabeth christie

    I too was born with nail patella syndrome . It has been in my family for generations . The worst pain is not in the knees [though they hurt all the time ] but in my lower legs . I have never understood the mechanism behind this pain but now think it is a type of sensory neuropathy : posh way of saying there is a dysfunction in the part of the nervous system that sends sensation-messages to the brain , eg hot,cold ,sharp, ticklish , painful . It is worse at night , my legs feel heavy and I do not like the weight of the duvet on them or the pressure of the bed underneath. there is a burning dull ache which keeps me awake and I am exhausted in the morning . I have had this for 67 years ….but not anymore ! I started to use a cbd product a few days ago : it is in a base of coconut oil and came from natureambassador.com . I so far have not taken it by mouth but rub it into my lower legs and knees . The effect has been miraculous -so much so I am dating the beginning of the rest of my life from last week . I am sleeping unbelievably well now that I am no longer wrestling with the pain at night .I am not sure how many other people with nps have that type of pain but ”sensory neuropathy ” is in the list of symptoms and it does not happen on the rare occasions when my knees stop hurting so it is all linked in .

    October 15, 2019 at 11:31 am Reply

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