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Emilie55 
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About Me
Emilie55
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About Me
I worked for years at the Smithsonian (Air and Space or NASM)until about a year ago....I was having so many injuries to my joints because of the a form of Hypermobility (Loeys-Dietz Syndrome very rare it's like Ehlers-Danlos and Marfan's put together).This last injury was just by picking up an exhibit case totally damage my lower back...after a nine hour surgery; rods, screws with carbon cage to hold my back stable, all this by picking up something. There is so much movement with my joints I am surprised this didn't happen sooner...up to 10 surgeries for joint damage ( all different parts of body). Now placed on long term disability (work place me on long term disability fought it the whole time...I guess it's called denial) I have not got use to the idea yet! To tell you the truth hypermobility Loeys-Dietz the genes were only discovered 2005....just my luck huh! The medical system is almost clueless how to treat this... went to Johns Hopkins to see Dr. Howard Levy one of the few people that understands this, and even he doesn't have a lot of info. Can drive one nuts....Working on adjusting....and understanding the medical system, it's a maze of paper work to get equipment and treatment....there favor responses is NO....I better stop it sound like I am a crabby person today....ugh!
I worked for years at the Smithsonian (Air and Space or NASM)until about a year ago....I was having so many injuries to my joints because of the a form of Hypermobility (Loeys-Dietz Syndrome very rare it's like Ehlers-Danlos and Marfan's put together).This last injury was just by picking up an exhibit case totally damage my lower back...after a nine hour surgery; rods, screws with carbon cage to hold my back stable, all this by picking up something. There is so much movement with my joints I am surprised
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Interests
I love drawing, paint , making jewelry....I take care of three furry fang guys....Cat number one Zeus is the only cat I know that is ADD, cat number two Cronus thinks he is a Greek God and cat number three Sweet Pea known as sheath kitty, you can never see her just heard hear......
I love drawing, paint , making jewelry....I take care of three furry fang guys....Cat number one Zeus
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Support Groups
Close Ehlers-Danlos Syndrome
Emilie55 hasn’t entered any details for this support group.Close Epilepsy & Seizures
Had a brain bleed at 13,and have been dealing with Jacksonian Epilepsy every since.
Treatments
- Neurontin Working / Worked
- 1800 mg a day
Open Hypermobile Syndrome
I have Loeys Dietz a form of Hypermobility
Open Reflex Sympathetic Dystrophy
had a lateral release for my right knee and 6 weeks later leg turned light blue and leg, the leg sallow from hip to my toe and the PAIN no stop
Treatments
- Lyrica Working / Worked
- 60 mg a day
- Neurontin Working / Worked
- 1800 mg a day
- Oxycodone Working / Worked
- use some times
- Spinal Cord Stimulator Working / Worked
- It works were I can be functional.
Open Scoliosis
Born with it.
Treatments
- Brace Working / Worked
- Were daily
- Harrington Rods Working / Worked
- Surgery took nine hours,screws, rods, carbon cage to straighten out.
Open Marfan Syndrome
Emilie55 hasn’t entered any details for this support group.
