Your Fantastic Mind Season 1 Ep 1: Tuberous Sclerosis
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- čas přidán 28. 10. 2020
- Joshua Grant's mother knew there was something different about her son when he was a baby. That something was a rare genetic disorder called tuberous sclerosis. It hasn't kept him from making music his whole life.
I love this video!! I too, live with Tuberous Sclerosis. I was diagnosed with this disease when I was 18 months old when I developed seizures. I have three lesions in my brain, one in my heart, and cyst size lesions in my kidneys. One of the areas that I can't move due to the small lesion in the frontal of my brain is my upper half of my lips when I talk. One of the many things that helps me to forget about this disease is my amazing long term memory. I use that to my advantage. My short term is not good, and I do have difficulty with social cues and understanding emotions as well as struggling to process when things are just explained to me. I also don't have a driver's license either. My mom has been my biggest advocate and knows the challenges that I still have to face on a daily basis. You're not alone Josh!!! The Tuberous Sclerosis Alliance is also a valuable resource for parents and children ravaged with TSC as they are doing continuous research and hoping that one day there will be a cure.
Hello. My son has Tuberous Sclerosis as well. His name is Noah. He is 26. I relate to your story so much. After Noah's second brain surgery, he became paralyzed on his left side for two months. Now he has left side weakness. I never knew about treating it with Botox. You are a wonderful mom & your son is amazing. So cool how he is musically gifted. Thank you for sharing. Love & blessings from San Diego🩵💙🩵
Josh is an amazing young guy
You are an inspiration boy ❤️
This is very inspirational
Thankyou thankyou thankyou for sharing
I lost my 1st child through tuberous sclerosis 2 ..complex ...he was only 10 months old ......he had ...10 tumors in his heart ..before birth , after 3 months he had ...7 lessions in brain ......after 7months ...daily seizures were occur...i m in tention ..now ...bcz i lost him ...before 3 months ...in april 2024 ....why ...god did this ..why ..?😢😢
My son tubruses clorses sir I try too my son I'm Always with him I treatment lukhnow PGI hospital
Both of my children have this
One is in better shape than the other
One is a high honors student and oxcarb medication has been working he is 18 now
And drives
The other struggles with school pretty bad and doesn’t make social cues and had focal seizures returned as she reached puberty been 3 years and they can’t get the cocktail of medications to work and still has seizures sometimes 3 in a day
The only one that really has helped a bit is the cbd oil
She does have a beautiful voice and can sing like no other
God makes some light even in the dark times
I’m so sorry you had two with the same disorder. It’s like many disorders,there is mild and severe. The sad thing for us is what’s going to happen when we are no longer here. It’s a rare disease. Our child is 37 has no communication and severely autistic. We hadn’t heard of this until the 16 week scan. We had no idea the sort of life that was waiting for us. I wish you well and hope things work out 😉
Same problem my child😭😭
Hi
@@sandeepkumaradvocateHi, How does this affect you. I hope you are well and not effected to badly. We are uk and have a 37 year old with TS. He is quite severe. He is autistic with no communication. It’s very sad. 🥰😉
both my boys have Tuberous Sclerosis
I’m so sorry to hear that,how severely are they affected. Do you get much help. If they are young and you need some advice I have a 37 year old that I could help you understand what you might be heading for.