Planning for Your Future With Adult-onset Adrenoleukodystrophy

Planning for Your Future With Adult-onset Adrenoleukodystrophy
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Learning that you have adrenomyeloneuropathy (AMN), the adult-onset form of adrenoleukodystrophy (ALD), can come as a shock.

Here are some steps you might want to take to help plan for a future with a chronic disease.

Gather support

You can’t predict your future health, or who might be around to support you. So, it’s prudent to set up a care team to help with expected needs. In addition to a spouse or child, an extended family member or even a friend could be a resource.

It’s also a good idea to plug into ALD support groups, so you can share concerns, ask for advice, and otherwise talk with people who are living with the same disease as you.

Consider if where you live is best for you

It may make sense to move closer to family or others who can help to support you, if possible. This may be particularly important if you are having trouble walking, and if the disease affects your ability to think and plan well. Cerebral AMN, which affects the brain as well as the spinal cord, is a more severe form of this adult-onset disease. In an estimated 10 to 20% of patients with brain involvement, damage to the brain is progressive.

Plan for a suitable home environment

If you plan to remain in your home for the foreseeable future, make sure you have appropriate space for care visits by a physiotherapist or occupational therapist. Some patients may require adaptive devices, such as braces, wheelchairs, or automatic chairs, and a home would need to accommodate these as well.

Assess future financial needs

Managing personal finances can be challenging for anyone. People living with chronic illness often face a unique set of financial challenges, ranging from medicine co-pays to health plan deductibles or limits. With a diagnosis, you may need to reassess your financial priorities.

Consider getting professional help, making sure to share your health status with your financial adviser so it can be factored into long-term planning.

Engage with others

A chronic disease such as AMN typically affects bowel and bladder control, as well as speech and movement, making it hard to keep social or to keep making plans to engage with friends and family. Continued muscle weakness and problems with coordination and balance can be quite frustrating.

Still, it’s important for your mental as well as your physical health to continue to engage with others and be social. But be sure to stay flexible to accommodate day-to-day needs, and follow your doctor’s instructions.

Help raise awareness

You and your family may consider getting involved in efforts to raise awareness of ALD, a rare disease estimated to affect about 1 in 20,000 to 50,000 people globally. AMN constitutes roughly 25–46% of all ALD cases.

Like many other rare diseases, ALD remains an under-diagnosed or misdiagnosed condition, and is often misunderstood. Patients can go years without knowing the underlying cause of their symptoms.

The sooner a person receives an ALD diagnosis, the sooner treatment can begin that helps to maintain their quality of life. Greater awareness also tends to bring more research support. This could lead to new and better ways of treating ALD, and possibly a cure.

Consider joining a registry

Much remains to be understand about ALD. The ALD National Registry is a natural history (no treatment) study (NCT03789721) of this disease, aiming to deepen scientific knowledge and better support patients globally.

It is currently recruiting up to 1,000 males with ALD, or females who are carriers of the disease, of all ages. The University of Minnesota sponsors the registry, set to run until 2030. Contact information is available here.

 

Last updated: Jan. 13, 2021

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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 providers 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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