You all will LOL at this first I read the average age a person with NF lives is age 54.
Yikes I am going on 53. Said FRoberta Messner PhD RN in Huntington west Va on a web page if yuo gogle it yuo can find it too. Then on top of that a NF researcher Dr Peggy wallace i am going to her talkk on NF down in gainsville,FL, ( GO GATORS ) on the 16th from 9-2 then go to a talk on fibromyalgia from 2-4. well seems dr. Wallace works with dr.Staud the fibromyalgia researcher in Gainsville too. She relied back they havenot sen many patients with NF #1, a plexiform on right upper thigh area, Fibromyalghia (FIBRO),Myofascial pain, (MPS)Multile chemical senstivites (MCS) all together so i am unique.I get tot alk to both Dr's after there talk at the UF food court. So seems something wil come good uot oft his.
Theyare loking into gene therapy for NF #1 nad also something to deplete certain Genes to shrink or do away with certain plexiforms.That is huge.
I also found uot Ihave severe osteoporsis of hips moderate of spine so if i fall i cuold break a hip. Miss Freddie I am now using a cane tooand alos havea 4 pronged one inhte huose. Might ask for a RX for a walker with a seat to sit on too donot need a broken hip. but just had to smile being told I am uniqu with my NF,Fibro,MPS,MCS makes me smile. wish BigBrother AKA Ghostwriter was stillaorund tohear thishe would laugh nad make a joke with me on it.Imisss his books, e-mails and his care packages too but knowing he is free from his NF walking the sgtrets of Gold withhis Jesus and loking down on us makes me smile to but justhad to share this all with yuo.I donot come here that often to ost but i do red nad pray for each of yuo too. right now the fibro,MPS,NF pain is ouchie.I canot do benydryl that wires me and on Neutropin for my fibro 300mg 2 pills 3 times a day which i am cutign abck on no Lyrica due tome being on a Ace inhibitor and no Savella due to myheart trouble but i get by. so just remember me in yur rpayer onMay 16th long day nad sunday wilbe resting and catching up wiotht hings too for Gainsville si a good 2 huor drive long way or short way is 1 1/2 then lectures all day long. pillow extra pain pills, protein bars, water to drink etc and lotionnad some smell good lavedar hand lotionand also camera with extra batteries nad big SD card too for pictures.I domiss hering from marcy,eesnow,Mark, miss fredie nad few others too. so e-mail me ok gys and glas seem if i doot post no e-mails and thathurts too.I am no longer a moderator for fibro i stpped own tomuch stressnad let others do it too. heidi
He is your friend, your partner, your defender,
> your dog. You are his life, his love, his leader.
> He will be yours, faithful and true, to the last
> beat of his heart. You owe it to him to be
> worthy of such devotion"