Alpha mannosidosis is expected to have an immense impact on patients, caregivers and families. As a chronic condition, those with the condition will require lifelong medical care. Even in mild forms, individuals can be expected to have a wide range of medical conditions, which may include intellectual disability, impaired hearing, skeletal abnormalities, and other problems. Given this, patient will need constant medical attention and be reviewed at least yearly by a team of specialists.
With this in mind, the home environment should be adequately prepared to meet these needs, such as the use of ramps to allow wheelchair access. If needed, you can also make the home more ‘friendly’ for someone with visual impairment, which might include increasing the amount of light, fixing any hazards for walking and install non-slip flooring in the bathroom and kitchen.
Moreover, individuals will need early educational intervention for development of social skills, speech therapy and special education to maximise learning2. Thus, caring for someone with alpha mannosidosis can be extremely challenging. If you are caring for someone with the disease, always keep in close contact with the specialist who is managing the person, as they can provide specific advice depending on the individual needs.
Dr. Stewart Rust, Pediatric Neuropsychologist at Royal Manchester Children’s Hospital, discusses the psychological and social impact of rare diseases on everyday life, with a focus on Lysosomal Storage Disorders and Alpha-Mannosidosis. With touching words, he explains that simple gestures like listening and talking to these people can help them feeling more included.
The information on this website is intended only to provide knowledge of Alpha Mannosidosis disease health topics. This information should not be used in place of advice from your GP or other healthcare professional. If in doubt please contact your doctor for advice. This website has been produced by Chiesi Pharmaceuticals. The website has been developed in accordance with industry and legal standards to provide information for healthcare professionals and the general public about Alpha Mannosidosis disease health topics. Chiesi Pharmaceuticals makes every reasonable effort to include accurate and current information. However, the information provided in this website is not exhaustive.