Leukodystrophy

Leukodystrophy is a genetic disease that causes progressive damage to the nervous system and eventual death. This is to show people what this disease looks like, and the research being done to try to treat and cure it.

For more detailed information and links see my blog:
http://leukodystrophyonline.blogspot.com/

Category:

People & Blogs

Tags:

• Genetic
• children
• disability
• leukodystrophy

[BDproductions696]

but i have the adrenoleukodystrophy which effects the adrenel glands which breaks down fatt and now i cant eat saturated fats and if i do it eats away my myelin i have to take alot of drugs like cortizone and florineff are perscribed and i have to take about 7 more non perscribed i was diagnosed at age 3 and my life is almost normal i just cant eat fats and try not to get hurt

[catherinespark]

Hi, glad you're doing well and that you have such a normal life and caring family. I can't eat protein and need to take amino acid supplements and calorie supplements as a result. Something in common though probably a totally different experience :-) All the best!

[bigdiesels]

Im doing a project about ALD for my course and this is a Terrible disease I couldnt image what these young children go through its just breath taking, its unreal, this disease and deadly. Its sooo sadd! Id give the world to them if I could.

[catherinespark]

So would I....good luck with your project, and glad if the video helped. Any kind of awareness of it is brilliant so well done for the project.

[redfred1500]

God help them, I don't understand how this can happen to wee children its just not right :(

[catherinespark]

I know :( Are you from Scotland by the way? I come from Inverness!

[OhHughJorgan]

My 5 month old baby girl has been diagnosed with a luekodystrophy but we don't know which one yet. Thank you for posting as information on this is hard to find in Australia.

[zackkcaz21]

My daughter may have this, shes only one month old and MRI scans show that her white brain matter is very low..she has no symptoms as of right now other than she's not feeding correctly. She will drink a bottle like normal, but sometimes only drinks 10-15 ml and we tube feed the rest. Can someone with this please email me? The doctors are all clueless and was not expecting this before the scan. Thanks:)

[AngelaPalotes]

Dear Catherine: Our beloved daughter Lucia passed away last October 12, 2009 ... how sad it is that we could not do anything else to keep her with us .. a hug for you and for all children and families who suffer Leukodystrophy.We have created in Colombia the "Lucia Wings of Hope" foundation, to help families and beautiful children who suffer this terrible disease

[gabbb432]

A good friend of mine was diagnosed age 8 with cerebral palsy, he is now 16 and has been rediagnosed with MLD. He is inspiring because although he has been told his life expectancy is significantly reduced and he will never grow up and have a family, his main concern is that he will not be able to be a PE teacher because of paralysis of his legs. I wish everyone going through this the best.

[BDproductions696]

and my aunt made a website fightald (.) org

[BDproductions696]

i was diagnosed at age 3 with adrenoleukodystrophy butt now im 14 and living healthy and i wish you lots of good luck with your duaghter

[BDproductions696]

i actually have this disease i was diagnosed at 3 years old when my mom met her mother for the first time she found out what i had