Alpha-mannosidosis

What is the prognosis for people with alpha mannosidosis?

There is limited information regarding long-term outlook for people with alpha mannosidosis. Much of the literature describes cases in children. Frequency of infections, such as colds, pneumonia, ear infection, and stomach flu is often worse in early childhood and improves with age. Muscle weakness and central nervous system disease (e.g., cerebellar disorders) tend to become evident in adolescence to early adulthood. These symptoms tend to slowly worsen overtime. Intellectual disability is common and adults tend to have an IQ of 60-80. Intellectual disability remained stable in some, but not all reported cases. Bone involvement is highly variable, but symptoms may decrease with age. While people with alpha mannosidosis have lived well into adulthood, there is very limited data regarding life expectancy and cause of death in affected adults.

Last updated on 05-01-20

How might alpha mannosidosis be treated?

Treatments to address individual symptoms are recommended as needed, such as vaccinations, antibiotics, hearing aids, glasses, orthopedic and other assistive devices, educational interventions, and speech therapy. Regular follow-up to monitor health and treatment response is advised.

Current treatment options for alpha mannosidosis may include bone marrow transplant or peripheral blood stem cell transplantation. Enzyme replacement therapy may be an additional treatment option in the future.

Last updated on 05-01-20

Name: Canadian Society for Mucopolysaccharide and Related Diseases Inc. (Canadian MPS Society) #218-2055 Commercial Drive Vancouver, BC V5N OC7
Canada
Phone: 604-924-5130 Toll Free: 800-667-1846 Fax : 604-924-5131 Email: info@mpssociety.ca Url: http://www.mpssociety.ca
Name: National MPS Society P.O. Box 14686
Durham, NC, 27709-4686, United States
Phone: +1-919-806-0101 Toll Free: 1-877-MPS-1001 (1-877-677-1001) Fax : +1-919-806-2055 Email: info@mpssociety.org Url: https://mpssociety.org/
Name: Society for Mucopolysaccharide (MPS) Diseases MPS House Repton Place White Lion Road Amersham Buckinghamshire
HP7 9LP
United Kingdom
Phone: (+44) 0345 389 9901 Email: mps@mpssociety.co.uk Url: http://www.mpssociety.co.uk
Name: Hide and Seek Foundation for Lysosomal Storage Disease Research 6475 East Pacific Coast Highway Suite 466
Long Beach, CA, 90803 , United States
Toll Free: (844) 762-7672 Email: info@hideandseek.org Url: https://hideandseek.org
Name: The International Advocates for Glycoprotein Storage Diseases (ISMRD) 20880 Canyon View Drive
Saratoga, CA, 95070, United States
Email: info@ismrd.org Url: https://www.ismrd.org/
Name: Alex The Leukodystrophy Charity Alex TLC 45 Peckham High Street
London, SE15 5EB, United Kingdom
Phone: 020 7701 4388 Email: info@alextlc.org Url: https://www.alextlc.org

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