Adrenoleukodystrophy

Project for IEC 522

Category:

Education

Tags:

• Adrenoleukodystrophy
• IEC522

[jeffdogg120]

i take care of a boy with ALD. He has had it for 10 years. Is there anyway that he can live with this?

[sjwise2]

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.

[ucmeski]

did your step dad's son ever try lorenzo's oil?

[sjwise2]

by the time they were able to diagnose him, it was too late.

[theveiwofanother]

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?

[sjwise2]

There is no cure for ALD.

[Poohdiddy2318]

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.

[peanfe]

Lorenzo's oil only helps delay onset of symptoms and is not a cure (contrary to what the movie implied).

[peanfe]

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.

[julie101rox]

wat about lorenzo's oil? aren't you supposed to take that oil at the begining of the disease? 

[RyannMusical]

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

[bryantolle]

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.

[squiggy123456789]

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.

[ciccicasillas]

@SkullCrusherer

ok, thank you very much!

[AceofDimonds0]

@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.

[ciccicasillas]

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?