Orphan Disorders, Narcolepsy
This lens was created to inform others about the disorders that effects me
and many others that go through life undiagnosed.
Narcolepsy sounds easy to dx,regrettably the disorder may be mistaken
for more common ailments. Shift workers having sleep problems is
a common complaint as is oversleeping but sometimes it pays to
dig deeper. My dx came after 47yrs and spending most of my adult
life in the medical field. This lens can benefit both you and me.
and many others that go through life undiagnosed.
Narcolepsy sounds easy to dx,regrettably the disorder may be mistaken
for more common ailments. Shift workers having sleep problems is
a common complaint as is oversleeping but sometimes it pays to
dig deeper. My dx came after 47yrs and spending most of my adult
life in the medical field. This lens can benefit both you and me.
What are Orphan Disorders
Advocate for proper care and understanding
Orphan Disorders are disorders affecting a small
percentage of the population. Unlike Cancer,Heart disease, or diabetes that are well funded through
goverment and everyday people like you and me.
Orphan disorders are largly unheard of and can be very difficult to DX, many have no substantial
treatment available. Some are fatal and expensive
testing is usually involved. Narcolepsy is what I live with day in and day out. It took well over 40yrs of complaining and pushing to recieve help, and I myself spent 20yrs in the medical field and was baffled. I did overnight and split shifts with either sleeping 4 hours a night or an easy 36 hours. Dreams are vivid and can mix with outside influences. An alarm clock can incorporate with a dream leaving someone running very late, NOT lazy. Dreams occur as soon as sleep does and dreams are present minutes prior to wake up. As a child I refused the standard afternoon nap, I was determined to stay awake despite feeling sleepy and knowing punishment was inevidable.
I could will myself awake from a dream, or will myself back into one. Of course when I mentioned this
there was punishment for making up stories. Most people fall asleep when excited or surprised. For me it was tense situations, sorrow or fear. Or explained away as 'day dreaming', poor attention span. I started wearing a watch as a young child as 'time' was something that just plain escaped me. Narcolepsy overshadowed a heart condition and triggered severe episodes of hypoglycemia. My salvation came from an annual eye exam, double vision became more than too much reading and improper lighting, a MRI was ordered and brain damage to the visual center was confirmed,
It was not laziness or fibs. From there, with in the month I learned about the problem I was born with.
percentage of the population. Unlike Cancer,Heart disease, or diabetes that are well funded through
goverment and everyday people like you and me.
Orphan disorders are largly unheard of and can be very difficult to DX, many have no substantial
treatment available. Some are fatal and expensive
testing is usually involved. Narcolepsy is what I live with day in and day out. It took well over 40yrs of complaining and pushing to recieve help, and I myself spent 20yrs in the medical field and was baffled. I did overnight and split shifts with either sleeping 4 hours a night or an easy 36 hours. Dreams are vivid and can mix with outside influences. An alarm clock can incorporate with a dream leaving someone running very late, NOT lazy. Dreams occur as soon as sleep does and dreams are present minutes prior to wake up. As a child I refused the standard afternoon nap, I was determined to stay awake despite feeling sleepy and knowing punishment was inevidable.
I could will myself awake from a dream, or will myself back into one. Of course when I mentioned this
there was punishment for making up stories. Most people fall asleep when excited or surprised. For me it was tense situations, sorrow or fear. Or explained away as 'day dreaming', poor attention span. I started wearing a watch as a young child as 'time' was something that just plain escaped me. Narcolepsy overshadowed a heart condition and triggered severe episodes of hypoglycemia. My salvation came from an annual eye exam, double vision became more than too much reading and improper lighting, a MRI was ordered and brain damage to the visual center was confirmed,
It was not laziness or fibs. From there, with in the month I learned about the problem I was born with.
Living with an Orphan Disorder,
Narcolepsy is an Orphan Disorder
An orphan disorder can be very misunderstood, Many like mine can be managed with support from the Medical Community, family, co-workers and friends.
I will be adding more info in the very near future,
as I am updating my webstite,yourbounty.1shoppal.com &
my auction site, AuctionQuests/Your Bounty.
Please visit again soon, Your Bounty, Bernie S
I will be adding more info in the very near future,
as I am updating my webstite,yourbounty.1shoppal.com &
my auction site, AuctionQuests/Your Bounty.
Please visit again soon, Your Bounty, Bernie S
New eBay
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Lensmaster
Doreen DiSchino wrote
You really informed me of what you have lived with for all you life. You have written a very good article. I hope you edcate many people and talk with others with the same disorder. I wish you better health in the furture.
Doreen
Posted October 22, 2007
Lensmaster
Darcy
Hi Bernie,
I always knew there was something special about you.
I am glad you are finding some answers as I know you have strugled with many issues. You are the best. I am glad you now have some answers. Keep searching for answers and you will go far.
Love ya
Darcy
Posted September 08, 2007
by yourbounty
Hello world. This is my bio. for Your Bounty.
I hail from Upstate NY
Spent most of Adult Years working with the
disabled.
Now one yr of advertising m... (more)
I hail from Upstate NY
Spent most of Adult Years working with the
disabled.
Now one yr of advertising m... (more)
