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AuTuberousSclerosis
Australia
Приєднався 18 кві 2012
We support families affected by Tuberous Sclerosis (TSC). We spread the word about new treatments. We help families build support networks. We advocate for the best care for people with TSC and their families.
Tuberous Sclerosis Complex (TSC) is a genetic disorder that causes non-cancerous tumors to grow in the brain and on other vital organs. A combination of symptoms may include seizures, developmental delay, behavioral problems, skin abnormalities, lung and kidney disease.
Tuberous Sclerosis Complex (TSC) is a genetic disorder that causes non-cancerous tumors to grow in the brain and on other vital organs. A combination of symptoms may include seizures, developmental delay, behavioral problems, skin abnormalities, lung and kidney disease.
Deborah Yates discusses lung issues and TSC-related LAM
Deborah Yates discusses lung issues and TSC-related LAM
Переглядів: 141
Відео
Genetics and TSC (Tuberous Sclerosis Complex)
Переглядів 3166 місяців тому
Dr Clara Chung discussed genetics and TSC (Tuberous Sclerosis Complex)
Menstruation, Pregnancy and Fertility in TSC - Dr Kaushi Arulpragasam
Переглядів 74Рік тому
Menstruation, Pregnancy and Fertility in TSC - Dr Kaushi Arulpragasam
Dr Matthew Sypek on kidney issues in TSC
Переглядів 81Рік тому
Dr Matthew Sypek on kidney issues in TSC
TSA Light the Way Giving Day 2023
Переглядів 133Рік тому
Visit lighttheway.org.au to donate and help TSA (Tuberous Sclerosis Australia) continue to be a beacon of light and hope for anyone impacted by the rare disease TSC (Tuberous Sclerosis Complex).
Help Iluka raise awareness and funds for people living with TSC with TSA's Light the Way appeal
Переглядів 832 роки тому
TSA is a beacon of light and hope when a devastating rare disease, TSC comes crashing into their world. Watch this video to see why we need YOUR help.
Help TSA Light the Way
Переглядів 2102 роки тому
Help light the way for people with a devastating rare disease, Tuberous Sclerosis Complex (TSC). TSA is a guiding light for families when TSC comes crashing into their world. May 17 is TSA's Light the Way Giving Day appeal. Please donate to help TSA provide life-changing programs and services that will help the thousands of families impacted by TSC across Australia. Your donations will help fun...
Celebrating 40 years of TSA this Christmas
Переглядів 772 роки тому
This Christmas "Give a little gift to TSA". Watch this video celebrating 40 years of service and achievements for the TSC Community in Australia. We hope you'll choose to support TSA's work which is making a real difference in the lives of people living with the rare disease, Tuberous Sclerosis Complex.
40 years of Tuberous Sclerosis Australia
Переглядів 1722 роки тому
This video celebrates 40 years of service and achievements for the TSC community in Australia
Beyond the Guidelines - How We Can Improve Healthcare for People with TSC Around the World
Переглядів 993 роки тому
An interview with Clare Stuart
Transitions
Переглядів 643 роки тому
Sharryn Wells and Tricia Thornton discuss transitioning from child to adult care.
Sleep issues in children living with TSC
Переглядів 1453 роки тому
Associate Professor Honey Heussler talks about sleep issues in children living with TSC.
ASD and ADHD
Переглядів 5173 роки тому
Dr Vinita Prasad talks about Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD)
TSC Global Awareness Day 2021
Переглядів 1143 роки тому
An International TSC Community video to raise awareness about Tuberous Sclerosis Complex, by the team at TSC Europe
Dr Sean Kennedy talks about kidney symptoms associated with TSC, Oct 2020
Переглядів 4064 роки тому
Dr Sean Kennedy talks about kidney symptoms associated with TSC, Oct 2020
Neurodevelopmental Disorders in Children with TSC
Переглядів 6844 роки тому
Neurodevelopmental Disorders in Children with TSC
Emerging Challenging Behaviours, Dr Kate Thomson Bowe, July 2020
Переглядів 2454 роки тому
Emerging Challenging Behaviours, Dr Kate Thomson Bowe, July 2020
Sex and sexuality in TSC adults, Dr Liz Thompson (July 2020)
Переглядів 7 тис.4 роки тому
Sex and sexuality in TSC adults, Dr Liz Thompson (July 2020)
Chalk Family interview on ABC local for #Tatts4TSC
Переглядів 1645 років тому
Chalk Family interview on ABC local for #Tatts4TSC
Presentation of the 2016 Elizabeth Pinkerton Memorial Award
Переглядів 1227 років тому
Presentation of the 2016 Elizabeth Pinkerton Memorial Award
Kristian's TSC story - Kon and Jo Romios
Переглядів 8167 років тому
Kristian's TSC story - Kon and Jo Romios
How TSC affects the lungs, Dr Helen Whitford
Переглядів 4977 років тому
How TSC affects the lungs, Dr Helen Whitford
TSC and child development - Dr Rebecca Mitchell
Переглядів 3807 років тому
TSC and child development - Dr Rebecca Mitchell
TSC Research: achievements and future directions
Переглядів 1177 років тому
TSC Research: achievements and future directions
my Daughter has TS she 43 has brain Tubors kidneys eyes white patches on skin cant Talk or walk on her own seizures we had surgery on her brain for seizures last march she was a 10 pound baby and had seizures at 2 weeks old
My son have tsc 😢
Thank you so much for this video, it's been very informative to us, non-medical folks.
Thank God god bless you mam
Infantile convulsions 🤔
Can TSC baby live normal life
My cousin has it. He started having seizures at 6 months. He is now 44.
Nice to hear, but how is your cousin health now.
@@jenniferdorling9983seriously?
@dananabila4404 yes
I have this condition
Hard to find quality informative videos on TS it seems. Thank you for sharing
I have totally lost faith in a paediatrician who is too important to be contacted by email.
Pls send any information because my daughter is same problem How improve my child behavior , send any information pls..........
TSA was fortunate to have Clare Stuart as CEO. This interview highlights the benefits of working collaboratively with families, health professionals and international TSC groups to advance the care, research and knowledge of all aspects of TSC. Congratulations on co authoring this paper. I commend your encouragement to TSC affected families to support TSA.
😍😍😍
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my son have TS he have skin lesion on face i hope how to treat for him
My niece diagnosed with TSC and believe me I am literally crying ...we don't have any idea how it will going and how she will handle this things... 😭😭😭😭 God bless her 😭
My son is diagnosed with tsc and it is very difficult day by day
@@Iconic-solo i hope he gets well ❤️
Please write name of medicine and can I purchase online.
Pls reply
Can radiation exposure cause this?
Sir mne ne mara chokra ne bne ne che pan sarkhi dva nathi karavi sakta plz kak upay aapo
my son have ts he have lesion on face we live in thailand we want to know how to treat by rapamycin
my son have ts he is 7 year old we live in thailand
my son have ts
Bruh
Wooo. Go Helen! From a fan
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Thanks to everyone who is taking their time to read this testimony on how my son was cured from Autism, he was diagnosed four years ago, and he is now 6, I have tried several treatments and medications on him, nothing is working out and I am so frustrated. I keep praying to God and finally God answered my prayers, someone from no where walk to me and told me he want to tell me about this doctor he gas knew for years now from his own country, after everything I took the contact of the doctor and called and I was so surprised it was a female and I explained my son condition to her, she asked for my home address and the next day I got a tracking number or a parcel sent to me through dhl from Doctor Stella, after four days I received the parcel, I opened and found a liquid herbal medicine and some herbal medicine grinded and I found a letter containing the instructions on how to use this medicine, I called her and thank her so much and she told me we should thank God for everything, the next morning I started giving my son the medicines and after one week I was seeing a great changes in him and I continue until the medicine finish and everything last for just one month and a week, now my son is free from Autism, he can now talk clearly, behave normal and no seizures anymore. Help me thank Doc Stella for this and you can also connect with her on doctorstellaidemudia@gmail.com and doctorstellaidemudia@yahoo.com WhatsApp number is +2348157471852.,.
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Kudos for the video content! Forgive me for chiming in, I am interested in your initial thoughts. Have you considered - Lammywalness Huge Victory Guide (should be on google have a look)? It is a great one of a kind guide for discovering how to quit smoking minus the normal expense. Ive heard some interesting things about it and my cousin at last got great results with it.
My daughter is too old for headspace, but I need to find a psychiatrist for her in Adelaide. She is 37, has TSC with intellectual disability, epilepsy, brain (SEGA). Renal (AML’s) & lung (LAM) tumours. Over Christmas & New year, she spent 3 weeks in hospital (RAH) with psychosis (delusions, audio hallucinations). On discharge she was referred to community mental health, I was told we would hear from them within a day or so. It’s now been 6mths but we have yet to hear from them. Her GP has sent a 2nd referral & I have phoned them, but we still haven’t been able to make an appointment to see anyone. Each time I call I’m told someone will call me back but that never happens. I’m wondering if we are being brushed of because she has TS. How can I find mental health treatment for her?
If this was a realistic option for me I would do this topical cream but I would rather have laser treatment that will actually address them. Yeah it would be more painful and a bit of a drive to get to where the laser is available with whoever is in charge of my transportation since I don't drive. But I'm looking for a treatment that doesn't just touch the surface because I believe that I would at the very least be able to prevent the bleeds and get the growth of these angiofibromas under some control. They do get irritated and yes they make it difficult to clean my face especially around the nose. I see a new dermatologist soon.
My unborn baby has a prognosis of TS he’s due in 8 weeks. I’m terrified but hearing stories like yours gives me hope that my son can grow up to become a kind man. That’s all I hope for.
How is he now?
@@GaragebuiltOriginal Hi. TS is so varied you hope that yours isn’t going to be one of the worst cases. It would be good if this child is one of the lucky ones. 🥰
How is your child now?
Is this available in the U.S because im interested as well
Yes. You will have to get a prescription from your doctor. There's a pharmacy in Texas that will deliver to certain states. Doyle's pharmacy. Please Google it and check if they will deliver. It's very expressive. About $200
Massachusetts is home to the ESTABLISHMENT --- look at corporate OBAMA CARE --- it sucks. It is Romney CARE ---
Fasting has been around for thousands of years and it is amazing at helping for inflamation -- another thing big Pharma does not want you to know about. Our government worked with big Pharma to get American people using synthetic dangerous drugs that this disgusting industry uses --
Thank you all for sharing!
I definitely have TSC. I am a Mechanical Engineer in California. No seizures or mental, however, I do have al of the classic skin manifestations, dental pits, and periungual fibromas. Thanks for posting this.
I have tuberous sclerosis. I have absent seziurs, not grandmal seizures
Best presentation of the clinical manifestations of TSC I've watched on the www.. Thank you.
So glad it was useful to you. We think it's not talked about enough and we love Dr Thiele's ability to both explain and not alarm. Luckily, she's also doing research in this area so we should learn more about this aspect of TSC in the coming years.
Hi I am also one of the tuberous sclerosis patients from Denmark and I have that skin disease as well.. But I want to get rid of it and can I buy the medicine for skin plz?
Me too! you know votubia?
It also helps for the tubers Inside the Brain
Good day, how do I get in contact with your organization? Please respond...
That's my DOCTOR! HI DR SARKOZY! YOUR FAMOUS!
هل يوجد علاج
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