Alkaptonuria (AKU): A Rare Story Of Hope
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- Опубліковано 20 вер 2024
- Alkaptonuria (AKU) is a devasting disease. Since 2003, the AKU Society has been dedicated to stopping it in its tracks. This video explores how far we have come by hearing from the inspirational people behind our success.
Thanks to nitisinone, AKU is no longer a life sentence of pain and suffering. we now have an effective treatment that will stop those born with AKU from growing up with the debilitating symptoms. Now we must find a cure.
Thank you to all the patients, academics, clinicians and staff who have made this a reality.
I was told for 20 years my spine and hip pain was stress. I had a total hip replacement at age of 42…3 years later I was finally diagnosed with AKU. Thank you for this video. I was finally diagnosed with this by accident when I was doing a 24 hour urine test. I had a kidney stone at the time and uti and was put in the hospital in the middle of my home test. When I returned home 3 days later after surgery to remove stone, the urine was black. I had about 30 stones up to that point and a total him replacement by the age of 42 and no one could figure out many other condition I have. Theres not alot drs can do about the condition as I understand, but it does give me answers to why my joints are breaking down and have DJD as such a young age. Its starting to get worse as my shoulder joints along with my knee joints were torn this year and required surgery. Now I am passing several stone and have an obstruction. I have now been diagnosed disabled from having gout, osteoarthritis and rheumatoid arthritis...This video helps me understand more about my condition as most drs know nothing about it.
Great video! I have Alkaptonuria, and diagnosed myself. I've hadmultiple joint replacements and fusions. Thank you for all the work! 😊😊
Fabulous Presentation - thank you all so much for all your Life Changing hard work and dedication in supporting us to cope and live better lives, Brenda Coffey 😊
Great work guys, I really need the translation to Portuguese so other patients can understand. Thank you very much, Great great job, everyone.
So glad you have found relief in your pain 🙏🏻
SERIA IMPORTANTE PONER LEYENDAS EN ESPAÑOL ,PUES LO QUE NO SABEMOS INGLES Y TENEMOS ALCAPTONURIA NO PODEMOS SABER QUE DICEN ? GRS
When will have the tratament in Romania?
From what age, this pill can be start...???
Hi
Do you have the same problem
I am searching for medicine and treatment
@@shivaprasad150did you take any pills for that?
the sayt to me i have diss long ago, i always ignore it, the sayt to me i can,t eat meat, when the only thing i like is meat, i still eat it every day, the say to me take daily vitamin C, avoid protein, i never did that, and yhea im 28 almost and me wrist always make diss cracking sound, but i was a freerunner i did drops from 3 meter high roofs to hard floors never broke a bone when the sayt i will brake faster then regulair people so i never realy believed it, and i still dont wanne believe it the sayt i go wheel chair and i dont want to accept that, so far i still can move nice, but only me wrist is making wearth sounds and it let me alitle worry
Hi! Where are you come from? Itˋ s not right, that, you have to avoid meat at all. But you should not take more than 68gramms of protein daily. Is it possible for you to get that pill Nitisinone?
the sayt to me, i cant eat meat more bc it will speed up the process, but the only thing i like is meat XD