Anybody here have Tuberous Sclerosis?
440192
There are organizations for patients and family/friends with TS in the US and UK:\n\nhttp://www.tsalliance.org/ (United States)\nhttp://www.tuberous-sclerosis.org/ (United Kingdom)\n\nBest of luck to you in the future.
298955
Well, it's not a personal experience, but a friend of mine, after trying to get pregnant unsuccessfully, found out that she had cysts. She had those removed (must have been 2 years ago) and now she has a beautiful baby boy :-)
369905
I was diagnosed with CFS and Fibromyalgia when I was sixteen. That was over six years ago and I am still suffering from it. At this point in time there are no cures for either. Some people can go through a remission, I'm still waiting for mine. I am currently a full time college student and recently joined a gym. I've found that I'm better if I remain active and push through it rather than letting it keep me down and in bed.\n\nI hope for your sake that you do not have it, I wouldn't wish it on anyone. \n\nFeel free to email me if you want to talk about it. :)
897666
Here is the Yahoo Groups link for people with NF. Hope it helps. Good Luck.\nhttp://groups.yahoo.com/search?query=Neurofibromatosis
391799
My wife had one 3 years ago and doctors left it.  It turned out to be cancer and she is still fighting it. DO NOT HESITATE GETTING TREATMENT BECAUSE IT MAY COST YOUR LIFE AND YOUR KIDS WONT HAVE A MUM
1051478
You may not be able to easily find someone else on Yahoo! Answers with this syndrome, because it is so rare.\n\nInformation for question browsers about what this is:\nhttp://www.ninds.nih.gov/disorders/landaukleffnersyndrome/landaukleffnersyndrome.htm\n\nHere are some support groups you can contact to find other people having to deal with it. Even if these groups are not in your area, you can start to find a connection with others...\n\nhttp://www.sdrc.org/c_res_support.php\n\nhttp://www.rarediseases.org/\n\nhttp://www.friendsoflks.com/\n\nhttp://www.aphasia.org/\n\nhttp://www.cord.ca/\n\nmessage thread: http://brain.hastypastry.net/forums/forumdisplay.php?f=153
870040
I am 29 and have Epilepsy.  I have had it since i was 7yrs old.  Seizures were controlled with medication for many years but recently started up again.  I don't know of any support groups but you can get some really good advice from people in the forum rooms on the Epilepsy Organisation Website.  They will also send you a monthly newsletter.  I found it helpful!  It's something that you just have to get on with, it's a part of your life.  Good luck. xxx
835411
I do not have it, but I have a condition that can lead to it.\n\nI hope your mom has been diagnosed early... for her, and for you and the rest of your family.  \n\nLook it up on the net.  Web MD whatever, Google it, Wikipedia.  I dont want to tell you anything, you need to read it for yourself *and this d*ck telling you your mom is going to die... GO TO HELL MAN! what a jerk*\n\nI dont know how old you are.. but regardless.  Read what you can, understand as much as you can absorb... and love your mom and be a good girl :) \n\nGood luck to your family, I wish you the best.
1164342
I don't have the answer to  your question, just don't listen to the \nanswer above me!\nI've seen patients with your condition & know that can be very\nstressful. Listen to some of the answers given, check things out,\n& Good Luck!
295584
I have trichtotillamania, a disorder brought on by stress that runs in my family.  I've been compulsively plucking hair from my eyebrows, eyelashes, arms, and face since I was 8.  I can tell you from experience that two more will not grow back in place of a plucked hair, otherwise I'd be plucking 24/7.  Also, trichtotillamania is classified in with the other manias, such as pyromania and kleptomania...which I believe needs to be changed because it's more like Obsessive Compulsive Disorder...which I also seem to have a touch of since childhood.
770364
My husband, 24, has got an AVM in the Right parietal lobe of his brain.   I am not sure what a syrnix is, or where her AVM may be.  He was diagnosed with the AVM almost 2 years ago now, and has undergone 5 embolizations of it, with still more to go.  It has been a long, up and down battle, but as of now he is doing great!!   If you have any questions, or want to contact me, don't hesitate!--  Email me.  sonotech02@yahoo.com  \n  I work in the medical feild and have been researching this for the past 2 years with assistance from many doctors!
969983
My boyfriend has it, and he's gone through a lot.  Many surgeries over the years (and he's only 29) and a rough childhood with teasing and hospital stays.  I think NF ultimately produces some incredibly brave people, who have been through a lot.  Right now we're dealing with a particularly difficult obstacle that NF has put in front of us.  What I think now is... I'm glad I've found people here talking about it and I hope awareness increases.  And, of course, I hope for a cure.
88079
I suggest you ask your physician to refer you to a Geneticist, or you might find good info at the following:\n\nhttp://www.ninds.nih.gov/disorders/neurofibromatosis/neurofibromatosis.htm scroll down and you'll find more links.\n\nhttp://neurosurgery.mgh.harvard.edu/NFR/ this is a Harvard/MGH site scroll down and you'll find a Genetics link. \n\nI don't think you are going to get an expert opinion on Yahoo Answers. Hope you realize that most people just Google this stuff and aren't geneticists. This question is "hard to understand" because MOST people have never heard of Neurofibromatosis or von Recklinghausen's disease. And of course you'll get stupid answers...look who you are asking!
229315
no but i have type 1 diabetes... and alot of kids have it. if u go and talk to ur diabetic educator they have support groups for the kids and the parents of diabetics.. just where u learn more and the kids can interact with other kids with diabeties and know that they're not alone. im not sure what they do wehere your from but where im from they go on camps and its just like a little youth group ment to be alot of fun!! worth checking it out. i've never been myself i was 15 when i was diagnosed so i was too old. but i heard its a good thing for both the parents and kids
79763
I am.\nI have tried many things, but life daily life seems to interupt, though I am losing it slowly but surely.\nYes, it does effect my daily life, I wish I could have more energy for my kids and hubby
36175
Renal angiomyolipoma, a rare benign renal neoplasm constitutes less than 3 percent of all renal neoplasm. Two rare cases of renal angiomyolipoma were reported from the Department of Pathology, Dr. S.N. Medical College, Jodhpur in last fifteen years. Both were not associated with tuberous sclerosis. The relevant literature on the subject is reviewed.http://www.jpgmonline.com/article.asp?issn=0022-3859;year=1992;volume=38;issue=1;spage=46;epage=7,46A;aulast=Jain\nhttp://lam.uc.edu/html/body_renal.html
389909
I have it. I found out i had it in 2005 february. i had a big flare wen i found out and was in the hospital for two months but now im just on like different medicines and im fine. good luck