Today is Rare Disease Day

[snubbyfan]

I personally don't like to use the word "disease," rather, I call it a condition.
I have a rare condition called Multi-Focal Motor Neuropathy and it affects 1 in 100,000 people. Nearly put me in an electric wheelchair.
It's a degenerative peripheral motor nerve condition with no cure or treatment. However I have found that I can manage it with a healthy diet and exercise. So far.
Could be worse though. My preliminary diagnosis was ALS....
Anyway, I'm not looking for pity or prayers just some understanding.
There are lotsa people dealing with a rare condition on a daily basis. A lot, like myself, don't necessarily look disabled but do havta deal with a debilitating condition every single day.

 

[NYlakesider]

I personally don't like to use the word "disease," rather, I call it a condition.
I have a rare condition called Multi-Focal Motor Neuropathy and it affects 1 in 100,000 people. Nearly put me in an electric wheelchair.
It's a degenerative peripheral motor nerve condition with no cure or treatment. However I have found that I can manage it with a healthy diet and exercise. So far.
Could be worse though. My preliminary diagnosis was ALS....
Anyway, I'm not looking for pity or prayers just some understanding.
There are lotsa people dealing with a rare condition on a daily basis. A lot, like myself, don't necessarily look disabled but do havta deal with a debilitating condition every single day.

Been reading you for quite a while, my money is on you to be the one that does beat it!

 

[woodsltc]

Anyway, I'm not looking for pity or prayers just some understanding.
There are lotsa people dealing with a rare condition on a daily basis. A lot, like myself, don't necessarily look disabled but do havta deal with a debilitating condition every single day.

No pity, but I hope you don't mind if I throw a prayer your way for strength and comfort & a prayer for understanding for "all" that are dealing with debilitating conditions.

Don

 

[arjay]

Not the kind of news a guy wants to get Snubby!
After a nice active life I've had to just stop everything.Climbing the walls is a bear!
A stroke a year ago slowed me down,but I was getting it back. Couldn't convince my leg to run or ski anymore so I dug my old mtn bike out and started riding again. A few weeks into that they diagnosed a congenital anomaly of one coronary artery and a severe blockage of the left subclavian artery. Doing anything that raises my heart rate ends up cutting off the blood supply to the right half of my heart. So glad I hung up my tools when I did and headed for the mountains!!

 

[JohnRippert]

My oldest niece has Celiac Disease and it takes next to nothing in the way of gluten to really mess up her digestive system.

 

[Golddollar]

A like for how you're been taking care of yourself.

 

[krsmith58]

hang in there Wayne. keep on chooglin'. krs/kenny

 

[pmanton]

Your attitude makes me stop grousing about my complaints.