Dealing With Myelopathy in Adrenoleukodystrophy

Dealing With Myelopathy in Adrenoleukodystrophy
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Adrenoleukodystrophy (ALD) is a rare neurological disorder characterized by the accumulation of saturated very-long-chain fatty acids (VLCFAs) in the body due to mutations in the ABCD1 gene. Excess VLCFA destroys myelin, the protective sheath that insulates nerve cells in the brain, and damages the adrenal glands.

Myelopathy is a disorder resulting from compression of or damage to the spinal cord. Males with ALD develop progressive myelopathy leading to severe disability later in life. Women who are carriers of ALD may also show symptoms of myelopathy.

Here are a few tips on how to deal with myelopathy if you have been diagnosed with ALD.

Get evaluated regularly by a neurologist

A yearly or bi-annual evaluation by a neurologist helps screen for myelopathy symptoms. Regular checkups for myelopathy help ensure that treatment will be started without delay.

Eat a diet rich in calcium and vitamin D

Eating a diet rich in calcium and vitamin D can help strengthen the bones and muscles in the back. Consult your doctor or a dietitian for a personalized nutrition plan.

Exercise regularly

Light to moderate exercise can help alleviate the pain and muscle stiffness commonly observed in ALD patients. Exercise can also help improve posture and relieve neck pain associated with myelopathy. Be sure to consult a physiotherapist before starting any exercise regimen to avoid complications.

Consider using appropriate aids and adaptations

Using appropriate aids and adaptations can provide temporary relief from pain and help you perform daily activities more easily. For example, using a neck brace or a soft cervical collar can limit neck motion and allow neck muscles to rest. Be sure to check with your doctor to find out which aids are best suited for you and how long you should use them.

Do not opt for chiropractic manipulation

Chiropractic is a complementary and alternative medicine (CAM) therapy that deals with adjustments and manipulations to the spine or other parts of the body to relieve pain and correct alignment problems.

People with spinal cord compression or damage should never opt for chiropractic manipulation of the spine for pain relief, as several instances of myelopathic complications and delays in diagnosis due to manipulation have been reported.

Take medications only under medical supervision

Medications to relieve pain such as non-steroidal anti-inflammatory drugs (NSAIDs), corticosteroids, epidural steroid injections (ESIs), and narcotics that are usually administered to reduce pain often cause severe side effects. Make sure you take them only under medical supervision and at the prescribed dose.

 

Last updated: Feb. 27, 2020

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Adrenoleukodystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.

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