What are the Challenges of living with Mitochondrial Disease?
• Affects multiple organs, affects multiple family members, affects multiple generations. • Lack of awareness and understanding of the disease • Families are continuously forces to expend their very limited energy to explain their disease, advocate for themselves and fight for services. • Mitochondrial disease is often an ” invisible disease.” • Good day – patients look fine and healthy. They have more energy and appear rested. • Bad day – – patients appear tired to significantly ill. They are obviously fatigued and/or have significant illness. Repeated “bad days”often lead to decompensation and patients have difficulty returning to baseline. • • Mitochondrial disease is unpredictable. Day to day, hour to hour patients can develop symptoms and their stability can be threatened. • Difficulties establishing a diagnosis interfere with a patient’s ability to obtain adequate recognition, medical care, adequate insurance coverage, healthcare supports and disability services. • Lack of unders
