Pompe Disease
My Pompe Journey
My diagnosis and living with Pompe
What causes Pompe?
Understanding the cause of Pompe
Inheriting Pompe
Pompe is an inherited condition from both parents
Rare or Rarely Diagnosed?
Is Pompe rare or is it so obscure that people don’t know to check for it
Types of Pompe
Infantile and Late Onset Pompe
Symptoms and Signs
What are the symptoms of Pompe and could you have some or all of them?
Testing for Pompe
A simple blood spot test can check if you have Pompe
Medical Alert Page
A first stop for emergency service workers to understand Pompe Prior to starting treatment
Medical Alert Page in Italian
a translated copy of the medial alert page in Italian
Specialist Services and Treatment Teams
Understanding which specialist teams might be involved in your Pompe care.
Diet
Diet and Pompe
Enzyme Replacement Therapy (ERT)
ERT is not a cure but it does extend the wellbeing life of those with Pompe
BiPAP
Many with Pompe use a BIPAP to maintain breathing while lying down, it is a life saver and improves the life quality for many of us
History of Pompe
Understanding the man that discovered Pompe.
Knowledge Shares – Late Onset Pompe
LOPD Information about Pompe Disease
Links
Useful links to relevant sites
Charcot-Marie-Tooth Disease (CMT)
Toilet Cards
The bladder and bowel charity downloadable card
Myotonic Dystrophy
Inclusion body myositis (IBM)
Inclusion body myositis (IBM) help information
Myotonic Dystrophy
Myotonic Dystrophy help information
Mitochondrial Myopathy
Eating Well for Pompe Health
A simple guide to suggestions for eating foods that can help in living with Pompe and maintaining muscle well being
Mental Wellbeing and Pompe
A simple booklet that offers mental well being ideas on living with Pompe
Falls Prevention Information Sheets
A simple to use information booklet on the reasons people fall, issues surrounding falling and falls prevention.
Hope Travels – The Children’s Sloth Project
Aiming to give every child in the world with Pompe as soft toy called Hope that they can use to comfort themselves, be a mascot for hope in the future and take with them to medical appointments
Advanced Care Planner
Pompe Meal Planner
Oxygen Caution
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Pompe Disease