Here is a list of questions asked during the webcast and not answered due to time restrictions.

Responses provided by Eva Morava-Kozicz, MD, PhD, Mayo Clinic, Rochester, MN

Question and Answer Protocol – Most questions pertinent to the monthly topic are typically addressed during the presentation(s). Responses to questions not addressed will be sent to the individual who submitted the question. Please note that not all questions can be answered through this forum. If you submitted a question and have not received a response, please do not hesitate to contact us at Margaret.moore@umdf.org.

Question
Is taking Creon for Pancreatic Exocrine Insufficiency going to provide the availability of Short chain fatty Acids?
Response
Creon helps the gut with the uptake of fat in general from diet but doesn’t specifically facilitate short chain fatty acid uptake.

Question
I am a 37-year-old woman with non-genetically confirmed mitochondrial disease but guessed to be complex I or III. My largest struggle of symptoms is repetitive chronic viral infections; herpes virus I, EBV, varicella-zoster. My current doctors do not offer anything to address these infections besides anti-viral medications which my body has a hard time processing. Are there any other recommended treatments beyond this for this issue?
Response
I’m so sorry, this is very hard to live with these symptoms. I think the answer depends on the underlying immune problems, like the answer could be different if someone has abnormal T cell function, or low IgG or immunoglobulin levels, or low white blood cell count. Some of these problems (low blood cell count, or low immunoglobulins) can be treated as well, but many patients need to use anti-viral medication, to stay safe and have less episodes with viral infections.

Question
Based on the available knowledge and research/ trends now, how likely would there be a cure for Mitochondrial Disease in the next ten years?
Response
This is a very complex question to answer in a short summary. There are several trials in the direction of gene therapy, exercise and drugs increasing mitochondrial numbers, or gene transcription. There are also trial drugs decreasing mitochondrial damage and drugs regulating mitochondrial “death” which are very promising and suggest that mitochondrial disease will be treatable in 10 years. Some disorder types will get a treatment earlier than others, but there is a definite exponential growth in clinical trials.

Question
Anything on being able to repair breaks in mitochondria DNA or infusion of replacement mitochondria. I have mitochondrial breaks and I am slowly getting weaker and weaker. It seems to affect all my muscles and probably all of my cells. Any hope is better than the alternative.
Response
Unfortunately there is no repair for mitochondrial breaks but the antioxidants you take could significantly slow down ROS related damage. If you take vitamin C, retinol, vitamin E or CoQ, these could all help with stabilizing your mitochondrial DNA.

Question
Is there an increase in psychiatric symptoms (such as mania in bipolar disorder) during times of other physical symptoms (such as an illness or gastrointestinal trouble)?
Response
Psychiatric symptoms can be more severe in mitochondrial disease during any kind of stress: infection, trauma, surgery, accident, burnout, etc. When someone has a mitochondrial disease, everything which needs extra energy to cope with the stress can increase symptoms.

Question
My 2 adult sons and I have no neurologist closer than 10 hours from home to see. Why is everything for children? I’m educating all our local physicians but I have questions and no place to go. Also can someone with mito donate body parts? I was a match to donate a piece of my liver but no one had an answer.
Response
This is the time of virtual consults, you can choose a physician/specialist at any center and ask for help. Organ donation from mitochondrial patients is a difficult issue. The organ should be healthy and, in mitochondrial disease, the liver can be affected.

Question
What can I do to boost my daughter’s immune system and keep her healthy enough to fight the virus if she should contract it? Are there any vitamins or supplements she can take?
Response
Normal daily vitamin supplements are the best, and you can boost the immune system with taking vitamin D 500 U/l and vitamin C 550mg/day.

Question
I have mitochondrial myopathy (muscle biopsy) and Parkinson’s thought to be caused by a POLG defect. Swallowing and talking are deteriorating. Should throat muscle be rested or exercised by therapy?
Response
Exercise is good for all muscles, even when affected by mitochondrial disease, but always giving time for rest. However, when swallowing is not safe, the diet should be adjusted, and a swallowing study should be done to see if clear liquids are not causing aspirations, sometimes even the liquid food has to be thickened for safety.

Question
I was diagnosed via muscle biopsy this past June. I am 61 years old. Inherited from my mom. My one question is kind of like a tree with branches. Lol. Have I had this all my life?
If so, why has the worst of symptoms just been showing up the last 5 years?
Response
I wish I could examine you and know more about the specific genetic background to give you a proper answer. I assume that your diagnosis is based on genetic tests, so that means you were born with it. Yesterday during the lecture we showed a slide that you can function with “sufficient” energy for many years and you need some “trigger” which throws your body out of balance and you might show the symptoms of energy deficiency, and mitochondrial disease.