Tips to Keep Stress Levels Low When You Have Adrenoleukodystrophy

Tips to Keep Stress Levels Low When You Have Adrenoleukodystrophy
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Adrenoleukodystrophy (ALD) is a rare, genetic disease characterized by the accumulation of saturated very long chain fatty acids (VLCFAs) that can destroy the myelin sheath and damage the adrenal glands.

Symptoms of ALD — which include seizures, dysphagia (difficulty swallowing), ataxia (uncoordinated movement), and adrenal insufficiency (the body’s failure to produce enough of certain hormones) — can cause considerable stress.

Here are a few tips on how to keep stress levels low if you have been diagnosed with ALD.

Adopt a healthy lifestyle

Adopting an active and healthy lifestyle is key to avoiding stress. This includes eating well, spending time with friends and family, getting moderate exercise, and participating in activities that help keep you engaged and devoid of negative thoughts.

Get adequate nutrition

Adequate nutrition may help you better cope with the symptoms of ALD. Consult your doctor or dietitian for specific diet plans. If the symptoms of the disease haven’t fully manifested, you may be advised to take Lorenzo’s oil along with your diet to prevent VLCFA production. ALD patients often have dysphagia. Make changes to your eating habits to deal with dysphagia and make sure you’re getting the proper nutrients.

Get to know your symptoms

Understanding the nature of your symptoms is important to effectively deal with them. Talk to your doctor and learn more about the nature of your symptoms, their severity, treatment options, and how they may affect your lifestyle so that you can work out alternative ways of doing your daily activities.

Our website provides readers with information about the symptoms of ALD as well as news stories about ongoing research and clinical trials.

Stay active

Engage in activities that interest you. These could be hobbies or light exercise. Most ALD patients have mobility difficulties, so you may benefit from using aids and adaptations that help with walking or working at the office. Physiotherapy and occupational therapy can offer tailor-made exercises that help you stay fit, avoid injury, and perform everyday tasks more easily.

Stay in touch with friends and family

Friends and family offer the greatest support system you can have. Keep them in the loop about your symptoms and special needs. Spend time together and take part in recreational activities with them to take your mind off the disease.

Join support groups

Besides friends and family, support organizations such as the Stop ALD Foundation, ALD Life, ALD Foundation, and The Myelin Project offer resources and networking opportunities for ALD patients and clinicians. Joining these support groups can be a great way to boost your confidence and beat stress.

Stay away from nicotine and alcohol

Stress can lead to excessive smoking or drinking. However, remember that substances such as alcohol, nicotine, and caffeine often increase the inclination to feel stressed. Try to avoid these stress-inducers as much as possible.

 

Last updated: Jan. 23, 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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