tuberous sclerosis

living with tuberous scelerosis, epilepsy and learning difficulties. THis is baby Grace she was diagnosed with Tuberous sclerosis a while back so making a video diary off her progress so that others can help or learn from one another

Category:

People & Blogs

Tags:

• epilepsy
• tuberous sclerosis
• tumours
• learning difficulties
• heart murmurs

[themanfromutopia1]

Hi,hope Grace is well.My daughter Emily has T.S.The hospital gave Emily Vigabatrin for her Epilepsy and it stopped the fits almost over night.Emily later on had a problem being around people she didn't know which made school look like out of the question, but my wife had a word with the head teacher who allowed her to sit in the class for a month and take Emily home after an hour.Emily is now 7yrs old and goes to school all day on her own.Emily still has problems but she can live a normal life.

[geushky75]

@themanfromutopia1 thanks for the reply:) we have our first appointment at Great ormond street this coming wednesday as Graces epilepsy is unresponsive tto a great number of drugs. she has a small amount of tumours on her brain but hopefuly the hospital will be able to do something.

[ryhnmltm]

@morningview612 bana buradan ulaşabilirsiniz benim ve arkadaşlarımında cocukları tuberoskleroz sendromu

[morningview612]

.....I also have a 5 year old chihuahua named Precious&I call her my "Pet therapy dog." I don't let this illness take over. That being said, I've gone out&had some AMAZING experiences!! For example, I went to a Celine Dion concert&was a part of the meet&greet before the concert. That was a Christmas gift from my best friend&her mom. It was my #1 dream come true!! I also got to meet actress/comedian Janeae Garofalo! So, what I'm saying here is: I may have TS but TS doesn't have me!! ~Take Care!!

[morningview612]

.....It's a daily struggle just being able to breathe. I realize now that breathing is something pretty much everyone takes for granted. It's been hard but I always keep a positive attitude. Instead of dwelling on the negative, I think about the positives. For example, I like to say, " I may not have been blessed with good health but I have been blessed with WONDERFUL doctors." The hospital I go to has docs that specialize in TS. I also have the greatest family&friends to support me.......

[morningview612]

Aww, what a BEAUTIFUL baby Grace is!! Hello, My name is Laurie, I am 29 years old&I have Tuberous Sclerosis too. I was diagnosed when I was 9 months due to a grand mal seizure. I had seizures until I was 16 years old. Then at 12 years old, I had to have neurosurgery to remove a brain tumor that had grown to be the size of a fist. I now struggle with my kidney tumors&lungs. I've had numerous lung collapses&surgeries. I now only have 25% lung function&completely oxygen dependent........