Experiences with

Adrenoleukodystrophy

https://en.wikipedia.org/wiki/Adrenoleukodystrophy Seems LO has competitors. Adrenomix adds another oil, [i]conjugated linoleic acid.[/i] Aldixyl also adds c[i]onjugated linoleic acid[/i] , plus "powerful antioxidants at high dosages containing [i]alpha lipoic acid[/i] ".

The following is the simpler summary of the study: "The paper is about a disease called X-linked adrenoleukodystrophy (X-ALD), which is a rare and serious condition that affects the nervous system and the adrenal glands.

I came up positive for x-linked adrenoleukodystrophy. We have no family history. My question is.. Did anyone that is a carrier then go on for further testing? VCLFA panel? MRI? I have been reading so much and just need some guidance. Thank you so much! -Taylor

https://www.minoryx.com/media/minoryx-raises-e51-million-to-support-marketing-authorization-application-and-launch-preparations-for-x-linked-adrenoleukodystrophy-(x-ald)-therapy/ Any feedback from people on this trial???

To find out more: https://www.alextlc.org/childhood-cerebral-adrenoleukodystrophy-ccald-research-study/ Questions? Please ask in the comments section and I'd be happy to answer them 🙂

Has this been posted here before? Have it a second time if so. Read afresh if not. Objective: To evaluate abnormalities of the brain and spinal cord by MRI in order to understand the mechanisms leading to the disability of women with adrenomyeloneuropathy and the effect of physical exercise.

To find out more: https://www.alextlc.org/childhood-cerebral-adrenoleukodystrophy-ccald-research-study/ For any questions: suzanne@alextlc.org

You can find out more information by visiting our website: https://www.alextlc.org/childhood-cerebral-adrenoleukodystrophy-ccald-research-study/ Please ask any questions in the comment section, or alternatively email info@alextlc.org

Our proposed target patient population for this meeting is Adrenoleukodystrophy (ALD) in Adulthood: Men with adrenomyeloneuropathy (AMN) Men with cerebral ALD Symptomatic women with ALD The meeting will be held virtually, which will allow increased participation across the United States and the world

The topics include: -Introduction to Adrenoleukodystrophy -ALD Connect Bootcamp for Symptomatic Women with ALD -ALD Connect Bootcamp for Men with AMN -ALD Connect Bootcamp for Cerebral ALD And many more!

Article publised online in April 2021 Metabolic rerouting via SCD1 induction impacts X-linked adrenoleukodystrophy.

White matter abnormalities: MS; adult-onset leukodystrophies (Alexander disease; Adrenoleukodystrophy, ALD). Diffusion-weighted abnormalities (“cortical ribboning”) and symmetric thalamic changes (“pulvinar” sign): CJD Spinal cord MRI is suggested for myelopathic signs.

It says "The Society for Endocrinology is a UK-based learned society representing a global community of doctors, scientists and nurses who work with hormones. " https://www.yourhormones.info/ I was pleased to see that under the causes of Addison's disease, that adrenoleukodystrophy is listed.

Four of the patients were affected with demyelinating cerebral adrenoleukodystrophy at ages between 7 and 18 years old. The fifth patient was affected with pure AMN and Addison's disease.

Here is more information about Vitamin B Complex and their benefits: https://www.medicalnewstoday.com/articles/324856#about Here is information on how to deal with Peripheral Neuropathy from ALD news: https://adrenoleukodystrophynews.com/2020/02/20/dealing-with-peripheral-neuropathy-in-adrenoleukodystrophy

A team of researchers at Probably Genetic is working tirelessly to get undiagnosed Adrenoleukodystrophy (ALD) patients diagnostic answers faster. They are running a 1-minute survey in our community to understand the diagnostic journey of our families better.

A team of researchers at Probably Genetic is working tirelessly to get undiagnosed Adrenoleukodystrophy (ALD) patients diagnostic answers faster. They are running a 1-minute survey in our community to understand the diagnostic journey of our families better.

I want to know what kind of therapy it will help to my son to cure this adrenoleukodystrophy or what medication i need to do. I watched the movie of "Lorenzo's Oil" i have see the cure! The oil but i dont know how and where to find the oil

Hello Everyone, The Aidan Jack Seeger Foundation was established to address the need for information and newborn screening with respect to Adrenoleukodystrophy.

White matter abnormalities: MS; adult-onset leukodystrophies (Alexander disease; Adrenoleukodystrophy, ALD). Diffusion-weighted abnormalities (“cortical ribboning”) and symmetric thalamic changes (“pulvinar” sign): CJD Spinal cord MRI is suggested for myelopathic signs.