Alpha-Mannosidosis Tips

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.

Treatment is mostly aimed at helping to prevent complications and optimising the quality of life.1
Several types of interventions can be expected, including:

hearing aids

Hearing aids
for hearing loss

eyeglasses

Eyeglasses to
correct vision

use-wheelchair

Use of a
wheelchair

home-environment

Home environment

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.

Educational intervention

Moreover, individuals will need early educational intervention for development of social skills, speech therapy and special education to maximise learning.2 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.

How to Support People with Alpha-Mannosidosis: Because #Alphamatters

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.

How to Support People with
Alpha-Mannosidosis
Because #Alphamatters

How to Support People with
Alpha-Mannosidosis
Because #Alphamatters

Living with Alpha-Mannosidosis
The story of Peter and Helen

Living with Alpha-Mannosidosis
The story of Peter and Helen

  1.  Malm, D. & Nilssen, Ø. Alpha-Mannosidosis (https://www.ncbi.nlm.nih.gov/books/NBK1396/). in GeneReviews® (eds. Adam, M. P. et al.) (University of Washington, Seattle, Seattle (WA), 1993).