Adrenoleukodystrophy (ALD) and its adult-onset form, adrenomyeloneuropathy (AMN), can have both direct and indirect effects on a person’s sexuality. The following information may be useful as you manage this issue.
ALD and sexual development
While information on sexual development specific to ALD is scarce, there is relevant information about leukodystrophies in general. Patients with leukodystrophy often have delayed puberty and sometimes a decrease in sex hormones, especially males.
Physical effects of ALD on sexuality
In ALD, very-long-chain fatty acids (VLCFAs) build up inside cells causing damage to neurons, the adrenal gland, and testes. Damage to the testes results in low levels of testosterone, which can lead to smaller testicles and a reduction in the production of sperm. It can lead to low sex drive.
VLCFA buildup also can lead to neurological issues in the spinal cord and peripheral nervous system. These issues can lead to symptoms such as weakness and loss of sensation in the limbs in both male and female patients, which can affect sexuality. Lower levels of testosterone, together with the impact on the nervous system, can cause erectile dysfunction in males.
Other symptoms such as nausea, disorientation, and adrenal insufficiency also affect can a patient’s sex drive.
Psychosocial effects of ALD on sexuality
Along with physical symptoms, there are social and emotional impacts of ALD. They, too, can affect a patient’s sexuality.
ALD can lead to physical changes, such as differences in the way someone walks, weight loss, incontinence, and speech difficulty. These all can affect someone’s self-esteem and body image, which all may influence sexual well-being.
Patients with ALD, and especially (AMN), may be prone to depression. These feelings also may be compounded by stress and feelings of loss if patients receive a diagnosis as a young adult. This could lead to disinterest in sex.
If a patient has a form of ALD, there is a chance he or she could pass the disease to their children. To prevent this, some form of contraception is recommended, whether temporary, such as condoms or oral contraceptives, or permanent, such as tubal ligation in women or vasectomy in men.
If the patient and his or her partner would like to have children, there are options to reduce the risk of having a child with ALD.
Last updated: Oct. 7, 2020
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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