Tuberous Sclerosis

Question: Tuberous Sclerosis? My 2 year old grand son has Tuberous/ tubular Sclerosis. Is there anyone else out there with it, or knows anything about it. I would love to know more about the condition, and long term consiquences.

Answer: Since you are in the UK, here is the Tuberous Sclerosis page for the Contact a Family organisation: http://www.cafamily.org.uk/Direct/t45.ht… Also a Leaflet from the Tuberous Sclerosis Association itself:

Question: Is there a condition other than tuberous sclerosis that has a side effect of hypomelanotic macules? Since my baby was born, he has had shaking and jerking episodes. He had a seizure at 3 weeks that lasted a minute or two. The neurologist said that the light colored patches on his body are called hypomelonotic macules. Since he has also had seizures, he feels that he may have a mild case of tuberous sclerosis. He also says that 50% of people with seizures do show signs on the battery of tests that are given to determine a cause(MRI, EEG and CAT scan. Tuberous Sclerosis does not have cure and is in the clinical stages of study so the treatment is in the preliminary stage. I would just like to know if there are any other conditions that would have these signs.

Answer: For help with the clinical signs of Tuberous Sclerosis, as well as loads of supportive information, visit the Tuberous Sclerosis Alliance: http://www.tsalliance.org/ Your computer (or anybody else's) can help find a cure for Tuberous Sclerosis! For information, visit Community TSC: http://www.childhooddiseases.org

Question: How do you discipline a child that has Tuberous Sclerosis Complex? My son was diagnosed with Tuberous Sclerosis Complex at 6weeks old due to a unformed eye. he is now 18months and i am struggling to discipline him as he doesn't really understand. I try saying No! to him in a firm tone but he just laughs at me, i have slightly tapped his hand also but again he thinks its funny. he throws alot of tantrums through out the day. How can i get him to take me seriously and respond to being disciplined?

Answer: If someone else were to treat your child as if he were handicapped and incapable of learning you would probably get angry. So dont do the same thing. Treat him as if he were a "normal" child. (for lack of a better word) this is how you want him to be treated by others and to think of himself as he grows up. so it starts with you. good luck and God bless you and your son.

Question: My cousin may have this thing named Tuberous sclerosis is it life threatening ? My cousin may have this thing named Tuberous sclerosis is it life threatening ? he is currently on medicine for Depakote he has suffer 2 seizures on december 12th 2008 and March 9th 2009 this is the 1st time in a while he had 2 back to back in a short time span he is only 14 years old i try to treat him as normal as possible

Answer: Tuberous sclerosis SIGNS AND SYMPTOMS General: Benign tumors can grow in many parts of the body, and symptoms vary depending on where the tumors develop. The most common areas for tumors to grow include the brain, eyes, heart, kidneys, lungs, and skin. Some people may experience symptoms of TSC at birth. Most, however, do not develop symptoms until they are 2-6 years old. Others may not develop noticeable symptoms until adulthood. http://www.wellness.com/reference/condit…

Question: I just want to know if there as many people as i think there are that have tuberous sclerosis? I was just wondering if there are anyone out there that have any questions about the genetic disorder tuberous sclerosis. I had the disease since i was two. Just curious

Answer: i have bilateral and multiple renal aml's which, you probably know, are common with people that have tsc. i might have it, waiting on my dr to order labs for me. in the meantime i've been doing a lot of research and have read 1 in 6000 are born with it. that differs from the stats i've read about how many people currently have it. may i ask how it's affected your life? take care!

Question: Does anybody out there know about tuberous sclerosis? Obviously, I have read all the info I can from the 'net and elsewhere, but that's not the same as personal experience. My son, who has learning difficulties, seizures etc is being investigated for this.

Answer: Visit the TS alliance, http://www.tsalliance.org They have an outreach program, clinic references, diagnostic criteria, a wealth of information. There is a project that uses home computers to find a cure for Tuberous Sclerosis. They also have a forum: http://www.childhooddiseases.org

Question: Do you or someone you know have a genetic condition called Tuberous Sclerosis? I do, and I would like to meet other people who have the condition. I am a 31 year old female simply looking for a few pen pals. :)

Answer: I don't know of anyone who has it but here is a support network you should look into. It sounds like a good one and they can even put you in touch with others in your area who are in the same situation: http://www.tsalliance.org/pages.aspx?con… http://www.tsalliance.org/pages.aspx?con… http://www.care2.com/c2c/group/tsc http://dailystrength.org/c/Tuberous-Scle… http://www.caringbridge.org/nc/tuberouss… Good Luck!!

Question: Is Tuberous Sclerosis an auto immune disease? I have TSC and have for many years dealt with major immune system problems among other things. I was curious as to weather or not TSC is linked to immune system problems. I find myself very lethargic and continuously sick. When I am sick it takes forever to get rid of things (or they tend to mutate). Any ideas?

Answer: You probably know more than I do about TSC, but almost nothing I have read about it suggests a link to auto immune diseases. The best source I know for current info is here: http://www.tsalliance.org I volunteer computer time to try and find a cure: http://www.childhooddiseases.org There is a Yahoo Health Group for TSC: http://health.groups.yahoo.com/group/tub… Grandpa

Question: Is there anyone here who's got tuberous sclerosis and born in the 60's? How do you cope? I've had this disease since I was 13 months old and no info came through for me till I was 26 and I lost my left kidney. It may be the mildest form in me but it's still been a complete heartless bully to me. Then again, I think of my friend who's battling lupus SLE and I think to myself I am lucky. I pray for her to get cured first and THEN tend to me but still there's got to be things I can do hopefully without meds that can help me. I'm open to all suggestions. I bring up born in the 60's cause I was born then and all they had was a name for the condition. I'm looking for updates for a condition that to me doesn't exist. Help.

Answer: I'm really sorry to hear that, but you know the answer already and it would be cruel to give you false hope. They are doing reseach all the time and you never know. But that's what everyone has told you already. You are right, it's complete heartless bully. But you are standing up to the bully and haven't given into it, you have battled it every step of the way. You said you have a mild form of the disease. But from your post I don't think you are giving yourself enough credit. You have fought the disease and refused to give in. I think you are the answer. You are the reason that has slowed it down and even made it back up. You have things you can still do and and you enjoy life as much as possible. People don't know how rare your courage is, you are a rare and beautiful person and even one of the meanest bullies of diseases couldn't take that away from you. God Bless

Question: tuberous sclerosis? what do you know about it? I am pretty annoyed with the fact that my doctors know nothing if anything about tuberous sclerosis, i was just diagnosed about three years ago! is there anyone else out there who can relate and might know anything about it? why don't they know anything?

Answer: You need a new Doctor if he doesn't know about it.. Tuberous sclerosis is a rare genetic disease that causes noncancerous tumors to grow in the brain and other organs. Symptoms vary depending on the location of the tumors. Some people have signs of tuberous sclerosis at birth. In others it can take time for the symptoms to develop. In some people the disease is mild, while in others it causes severe disabilities. In rare cases, tumors in vital organs or other symptoms can be life-threatening. Tuberous sclerosis has no cure, but treatments can help symptoms. Options include medicines, educational and occupational therapy, dermabrasion, and surgery. Common symptoms include Skin problems, such as light patches and thickened skin Seizures Behavior problems Learning disabilities Mental retardation Kidney problems