great content.

Nice and best video ❤❤

That's good video and Nice content ❤❤

Hello, I'm from Brazil, I also have this syndrome, in my country there are very few studies on the disease and treatments, I would like to know if there is any type of modern treatment in the USA?

Love this presentation… thank you all for your research and I hope we can find a cure for alport soon

The title of the video has a typo "patients"

Dr. Al Rabadi is one of the smartest physicians you can ever meet

I still think evolutionarily this couldn't have happened. The x linked men can't all be dead by 20. Likewise, it makes little sense for the kidneys to even hold up that long if they are structurally deficient. So the explanation is again that back in the day, people did not die from it until much later, because they were not nutritionally deficient the same way we are today. Lack of vitamin C, and too much iron, both depress collagen formation, and we know that collagen a112 has to be replaced more often because it's used in a tough job of kidney filtration. Low calcium is also bad for the kidney, since calcium is needed in inflammatory conditions and Alport would lead to frequent inflammation.

In principle, diseases that only result in organ failure by early adulthood do not make sense and point to the possibility of nutritional rescue. Eg Alport is a protein misfolding problem. Vitamin C is essential in collagen protein folding.

My mother and both of my brothers have x linked alports syndrome if I don’t have any symptoms is it still possible for me to be a carrier or is it more possible that I did not get the x link mutation from my mother.

wow! I just found this you tube and found it very interesting. Look forward to seeing those in the past and future. Thanks

I have alports, my brother had it. I am on my 2nd transplant, but with likely only last another year or so.

You are a living proof Thom Sonny Green, there is hope and you got through this. It made me cry when you got emotional for a moment when you talked about your donor. You are blessed and im so happy I can hear you play the drums and the band continue to make more music & perform live for us . Δ❤️ Love always.

I am also diagnosed with alports disease I m 31 yr old ...

I'm dishank I'm 18 and diagnosed with alport syndrome and life become very hard

I found out I had it after being rejected from service for proteinuria.

Thank you from South Korea

IL serait très intéressant de proposer des sous titres dans différentes langues pour moi en français serait un grand plus car en France cette maladie est méconnue !

Thank you. Hope is still there.

I think everyone should be a donor unless they ask not to. It isn't selfless to donate organs when you're dead.

My brother has this I’m so scared to loss him one day

Obviously no one his age is on dialysis.. Dialysis is hard. And people don't see how hard

Thank you very much for this. A lot of questions were answered.

Heartwarming! Respect!

Great information there drs Being a Alport syndrome patient myself it’s a kidney transplant off 19 years was not born deaf but became deaf at age 6 My eyes were very good till off late about 5 years I would say the eyes are bad now going in for surgery in about 2 weeks time but the back ground information is born in 79 mother is Syrian father is Syrian both had kidney problems form family members being brother from my mothers side and brother from my fathers side so I have the gens of A5’4’3 Started with hearing was born normal hearing but age 5 had to many ear infections ended up getting deaf both ears using hearing aids now but I don’t have the hearing speech I have perfect English and Arabic as for kidney was diagnosed at age 17 doing a urinalysis test that show anemia so went to a dr for the kidney and low and behold Alport syndrome by age 21 got on dialysis 11 months had a match for a new kidney and been good ever since 19 years now but as I said as off 5 years eyes are really giving* out on me hence why I’m doing the eye surgery in 2 times Post kidney transplant 6 months I am type 2 on insulin depending what I eat I need to use it if I’m eating clean keto don’t need it at all Meds 5mg persnison 6mg tacrol Lipitor 80mg also 8mg blood pressure even though I don’t have they use it for my kidney for GFR o help with blood and protein Very informative session very well spoken will take Onboard and try spread so more news My kidney dr is dr Mona rezavian t concord hospital Eye dr is dr Brian Harrisburg If you guys need my information or would like to get in touch feel free old love to collaborate it’s my life and stuff

Are the red cells in urine dysmorph or not?

Hello, are red blood cells in the urine dysmorph at alport syndrom?

I have this, my father donated to me a kidney as a living donor. Though, it is now in CKD stage 4 and I will need to go back on dialysis after 14 years with a kidney transplant. Gonna need a nother one. :/

Well... my dad died for this syndrom wen I was 15 years, I was a teenager and I dont understand his pain beacause he showed strong, I had to help him with my sister to prepare his dyalisis at home, he was very inteligent, lovely and quiet man, Now I want to make a tribute because he was a great and wonderfull father that each day he fought for your life and always work hard for give us great education and happyness between this situation. Dear father... Pardon me because I never understand your deep physical and emotional pain. My sister and I, have this syndrom and its very difficult when you get older. Hugs for all people that life with Alport syndrome, and excuses for my basic english. 🇨🇴🤗❤️

Im 20 years old I've had alport syndrome my whole life now im getting a kidney transplant soon

Thank you.

I lost my son in 2020 due to Alport Syndrome. He was only 25 years old. This disease is a nightmare 💔

thanks for this information.my brothr is diagnosed with this syndrom.

Guys me too, 😊❤️❤️❤️

im wondering, why not make it 1 longer video? it seems awkwardly cut

Thank you.

I have alport syndrome and didn’t know much about it

My daughter complains about her stomach bothering her and she doesn't want to eat. Is this normal for Alport?

Im 13 and also diagnosed with Alport syndrome

U need to know about any meeting near my area, we live in Sunnyvale ca....94086..Thanks!

Im 13 diagnosed with Alport syndrome.

unforunalty my sister infected with this disease in our country we don't have any cures

Hello, This is amazing! Im 13 and im doing genetic testing for Alport syndrome, My grampy had it and my mums a carrier so i have %50 chance of having it, My brother is 16 and has no signs of kidney disease, But i have, I've had blood in my urine for months now, Much love from Wales, UK

Sarah, My name is Joyce Silver. I am Paul's mom. I started this award because in 1982 my son was the recipient of a similar award and with the money he bought a camera. The camera was used to make a documentary of his semester in Italy for Penn State where he attended school. It gave my son the confidence not to let the disease define him and his future. I promised myself that someday I would pay it forward in honor of his memory. I am quite proud of you to see your video and hear what it has meant to you. Thank you for sharing your story. Hopefully your story will reach other candidates as well. I wish you well in your future endeavors. Joyce Silver

<3

Thank you so much for this video, very very helpful and informative!!

I know thom personally his sister is my mums best friend and he would look after me as a kid! I love ya thom! ❤️

I have it but oddly I'm the only one in my family who has AS

Thanks so much for inviting Dr. Morgenstern to speak on this topic. Until now I never understood the importance of specific lab tests. I appreciate the Doctor's patient and thorough explanation.

As an ceramic artist that loves music, I am a new fan of Alt-J, but it was the percussion that was the draw. Also a fan of Radiohead, the combination of the syncopated rhythms and sounds were mesmerizing. I love how you do what you do and to know what you have overcome is huge. Thank you for sharing such a candid personal story!