I lost my nephew to neo-natal ALD he was 4mos. old and the only known case on Guam.He was born Feb. 9th 1992 and Died June 15th 1992. He would have been 20 this coming Feb. I love and miss him very much... Love and miss you Christopher Michael. My two other nephews John 21 (was tested by Kennedy Krieger Institute) James 18 (was not tested) are both fine. What I didn't hear in this video is that this illness does have teen and adult variations and also the mothers can develop symptoms.
1. There is no cure for ALD. A gene therapy trial in France in 2009 showed promise.
2. re: Males who have the condition and have a daughter. The daughter will be a carrier as the faulty x chromosome is passed on to the female.
4. Bone Marrow transplants can be effective in stopping symptoms in boys but is only effective in cases where the male is asymptomatic or has early onset symptoms. Neurologists measure the severity via an MRI score (Loes score) before making a decision on transplant.
i^ve got the XALD i'v got now 25 years old iv got no symptomes and i work
i take some oils of colza and olive but not the lorenzo oils and i dont eat some saturate fat.. easy XALD doesnt have a cure but you can live with that
I know this comment is very late. But there is a cure for ALD now. I have two cousins who had this disease. They were diagnosed in November of 2009 and were admitted to Duke Medical Hospital. One was 9 and the other 4. They received stem cell transplants and if the transplant takes, they are cured... most of the time. So, for those of you looking for a cure. There is one. Another common treatment is bone marrow transplants and also Lorenzo's Oil, but the oil only works for a few years.
hi, my question is, could men pass the difect to their daughters? Are they carrier as well? Of course these kids won't have offspring, but theoretically speaking, wuoid it be possible?
I am so happy to see you left your video up for people to see after the class was over. Just look at how many people have viewed, learned from, and gained support! I am so proud! Thank you for sharing something so personal.
My son is 23. He lost his sight and hearing by 18 months. He has neonatle adrenoleukodystrophy. he has been treated with DHA, ARA and glicerotrioliate oils. He is unable to walk and is deaf and blind. He lives at home and attends a day program. There are many variations of Leukodystrophy. People with newly diagnosed ALD should ask doctors about DHA treatment. It does not work for all types of disease.
i throught i had it bad with (ADHD) and (Psychosis) (during school it was so bad i couldnt even go to year 11 so i left) but now ive just found out about (ALD) and i would just like to say that what i have is nothing compared to (ALD)
Every ALD video i've seen that you've left a comment on, you've had to make try and make a joke about the disease, its uncalled for and i find you so ignorant, think about the people who have to live with the fricken disease!
Hi, have I commented on any other ALD videos? Weird. I'm sorry I have a depression induced Psychosis and I like typing in three letter acronyms and see what I find.
But I now better understand the true defect in ALD. It's a transport protein and it rather than a hormone. Whod've thought!
You are an amazing young woman who has lved through a horriiffic disease. Tell your step dad that I understand his pain. My son "Taylor" passes in 2003 with ALD. You did a wonderful presentation, with very good and truthful facts. I hop you got an A+
not that I know of, but I don't claim to be an expert. In my step-dad's case, it was incurable and ended badly. But who knows, there could eventually be a cure.
first off sorry for commenting on such an old post.
i have had ALD for 14 years so far and i would say yes it is possible for someone with ALD to live a reasonably normal life, depending on how severe his case is.
I thought Lorenzo's OIL was to put the c24 and C26 in the chain of fatty acids to normal.So thus to futher ddecrese and beome stable. So delaying the disease isn't right is it?
there is no cure, but there are ways to minimize the effects of it.
And it can affect females, if they have 2 affected x-chromosomes. Its just extremely rare for a female carriers to have a child with a male that has the disease.
ALD may be cured if treated very early upon discovering the primal symptoms, I believe. This is done by taking Lorenzo's oil (which is a combination of olive oil and rapeseed oil extract). However, they will have to continue taking the oil.
a male who carries the disease cannot have a child with a female who does, he would die beforehand(remember males only have one x chromosome making any x linked disease dominant in a way)
No that isn't right, what is believed is that the body will produce what the body needs, the body NEEDS VLCFA, ALD can not break down starting at c18. The process of lorenzo's oil is that if you over load the body digestively with higher VLCFA then the body will not create an overabundance of it. Therefore eventually decreasing the amount that is abosrbed.
a wonderful presentation. you couldnt have put the words better. i lost my son to ald and the mor people know about this disease the better. for me i find it very hard to speak about. thank you from all those who have touched the world of ald.
Excellent Presentation. ALD runs in my family. Out of my mom's sisters half were carriers the other not. I've lost 2 cousins to this horrible disease.
Hi there,my name is Makaziwe, I was very moved by your presentation on adrenoleukodystrophy. I know all too well what can happen in the course of the disease after losing a close friend to it back in 2004.
we're watching that movie in class, you sound very well educated on this particular subject, i pray to god it'll be ok for me, my mom and my moms mom hadn't had any males so i wouldn't know if i could have a kid to have it or not.
I lost my nephew to neo-natal ALD he was 4mos. old and the only known case on Guam.He was born Feb. 9th 1992 and Died June 15th 1992. He would have been 20 this coming Feb. I love and miss him very much... Love and miss you Christopher Michael. My two other nephews John 21 (was tested by Kennedy Krieger Institute) James 18 (was not tested) are both fine. What I didn't hear in this video is that this illness does have teen and adult variations and also the mothers can develop symptoms.
Poohdiddy2318 5 months ago
Lorenzo's oil only helps delay onset of symptoms and is not a cure (contrary to what the movie implied).
peanfe 6 months ago
1. There is no cure for ALD. A gene therapy trial in France in 2009 showed promise.
2. re: Males who have the condition and have a daughter. The daughter will be a carrier as the faulty x chromosome is passed on to the female.
4. Bone Marrow transplants can be effective in stopping symptoms in boys but is only effective in cases where the male is asymptomatic or has early onset symptoms. Neurologists measure the severity via an MRI score (Loes score) before making a decision on transplant.
peanfe 6 months ago
wat about lorenzo's oil? aren't you supposed to take that oil at the begining of the disease?
julie101rox 11 months ago
i^ve got the XALD i'v got now 25 years old iv got no symptomes and i work
i take some oils of colza and olive but not the lorenzo oils and i dont eat some saturate fat.. easy XALD doesnt have a cure but you can live with that
RyannMusical 1 year ago
Thank you for the video and for telling Nick's story. You explained it much better and more fully than my copy of Cecil Medicine. Very helpful.
bryantolle 1 year ago
I know this comment is very late. But there is a cure for ALD now. I have two cousins who had this disease. They were diagnosed in November of 2009 and were admitted to Duke Medical Hospital. One was 9 and the other 4. They received stem cell transplants and if the transplant takes, they are cured... most of the time. So, for those of you looking for a cure. There is one. Another common treatment is bone marrow transplants and also Lorenzo's Oil, but the oil only works for a few years.
squiggy123456789 1 year ago
@SkullCrusherer
ok, thank you very much!
ciccicasillas 1 year ago
hi, my question is, could men pass the difect to their daughters? Are they carrier as well? Of course these kids won't have offspring, but theoretically speaking, wuoid it be possible?
ciccicasillas 1 year ago
Whoever downvoted everyone is a fucking jackass.
ohlookabunny 2 years ago
I am so happy to see you left your video up for people to see after the class was over. Just look at how many people have viewed, learned from, and gained support! I am so proud! Thank you for sharing something so personal.
lajung 2 years ago
My son is 23. He lost his sight and hearing by 18 months. He has neonatle adrenoleukodystrophy. he has been treated with DHA, ARA and glicerotrioliate oils. He is unable to walk and is deaf and blind. He lives at home and attends a day program. There are many variations of Leukodystrophy. People with newly diagnosed ALD should ask doctors about DHA treatment. It does not work for all types of disease.
JoeMSIE 2 years ago
i throught i had it bad with (ADHD) and (Psychosis) (during school it was so bad i couldnt even go to year 11 so i left) but now ive just found out about (ALD) and i would just like to say that what i have is nothing compared to (ALD)
I HOPE A CURE IS FOUND!!!!!!
KillerPeter955 2 years ago
Comment removed
TheNathanlong 2 years ago
This comment has received too many negative votes show
Girl is hot. Would have sex with her! But would pull out so that I won't make an ALD baby.
You can't synthesize the enzyme in bacteria like insulin?
JarvidO 2 years ago
JarvidO whats the matter with you?
Every ALD video i've seen that you've left a comment on, you've had to make try and make a joke about the disease, its uncalled for and i find you so ignorant, think about the people who have to live with the fricken disease!
TheNathanlong 2 years ago
Hi, have I commented on any other ALD videos? Weird. I'm sorry I have a depression induced Psychosis and I like typing in three letter acronyms and see what I find.
But I now better understand the true defect in ALD. It's a transport protein and it rather than a hormone. Whod've thought!
JarvidO 2 years ago
You are an amazing young woman who has lved through a horriiffic disease. Tell your step dad that I understand his pain. My son "Taylor" passes in 2003 with ALD. You did a wonderful presentation, with very good and truthful facts. I hop you got an A+
AbileneACO 2 years ago 2
Have you seen the movie Lorenzo's oil?
i just watched it in my biology class(reason i watched ur vid) its a very good movie that actually does mention almost everything u said in this
foryrux 2 years ago
good girl, save lifes x
MaxiBoOoY 3 years ago
he also communicates with his eyes.
jeffdogg120 3 years ago
i take care of a boy with ALD. He has had it for 10 years. Is there anyway that he can live with this?
jeffdogg120 3 years ago
not that I know of, but I don't claim to be an expert. In my step-dad's case, it was incurable and ended badly. But who knows, there could eventually be a cure.
sjwise2 3 years ago
did your step dad's son ever try lorenzo's oil?
ucmeski 3 years ago
by the time they were able to diagnose him, it was too late.
sjwise2 3 years ago
A cage, perhaps?
2012MUSTANG 3 years ago
There is a possibility depending on the phenotype, currently there are 8 known.
AbileneACO 2 years ago
@jeffdogg120
first off sorry for commenting on such an old post.
i have had ALD for 14 years so far and i would say yes it is possible for someone with ALD to live a reasonably normal life, depending on how severe his case is.
AceofDimonds0 1 year ago
I thought Lorenzo's OIL was to put the c24 and C26 in the chain of fatty acids to normal.So thus to futher ddecrese and beome stable. So delaying the disease isn't right is it?
theveiwofanother 3 years ago
There is no cure for ALD.
sjwise2 3 years ago
Yes there is. I have it. 20 bucks.
2012MUSTANG 3 years ago
there is no cure, but there are ways to minimize the effects of it.
And it can affect females, if they have 2 affected x-chromosomes. Its just extremely rare for a female carriers to have a child with a male that has the disease.
flickeringember 3 years ago
Alright, 17 bucks, and that's my final offer.
2012MUSTANG 3 years ago
ALD may be cured if treated very early upon discovering the primal symptoms, I believe. This is done by taking Lorenzo's oil (which is a combination of olive oil and rapeseed oil extract). However, they will have to continue taking the oil.
By cure, I mean stop the symptoms. Sorry. XD
TheDayIsNotLost 3 years ago
Exactly. I have my own blend though. It's a mixture of 10W-10 and SAE 10, with a bit of WD-30 to make it go down smooth.
2012MUSTANG 3 years ago
a male who carries the disease cannot have a child with a female who does, he would die beforehand(remember males only have one x chromosome making any x linked disease dominant in a way)
foryrux 2 years ago
No that isn't right, what is believed is that the body will produce what the body needs, the body NEEDS VLCFA, ALD can not break down starting at c18. The process of lorenzo's oil is that if you over load the body digestively with higher VLCFA then the body will not create an overabundance of it. Therefore eventually decreasing the amount that is abosrbed.
AbileneACO 2 years ago
a wonderful presentation. you couldnt have put the words better. i lost my son to ald and the mor people know about this disease the better. for me i find it very hard to speak about. thank you from all those who have touched the world of ald.
143markland 3 years ago
Another treatment would be statins such as Lovastatin.
flipgalrn 3 years ago
Excellent Presentation. ALD runs in my family. Out of my mom's sisters half were carriers the other not. I've lost 2 cousins to this horrible disease.
flipgalrn 3 years ago
I lost my son to ALD, I symphythise with your loss
AbileneACO 2 years ago
Hi there,my name is Makaziwe, I was very moved by your presentation on adrenoleukodystrophy. I know all too well what can happen in the course of the disease after losing a close friend to it back in 2004.
Makaziwe 4 years ago
we're watching that movie in class, you sound very well educated on this particular subject, i pray to god it'll be ok for me, my mom and my moms mom hadn't had any males so i wouldn't know if i could have a kid to have it or not.
jaedewashere 4 years ago
im so sorry!
jewgirl1127 4 years ago