Our mito community understands very well that life rarely goes according to plan. And as we find ourselves in the midst of a global pandemic, Covid-19 is yet another unprecedented challenge we all must brave.
While Covid-19 has altered life for citizens across the globe, there are undoubtedly populations gripped tighter. There are the individuals who find themselves at greater risk for contracting the virus, and with a more serious diagnosis, such as those with asthma and diabetes. And there are also communities faced with more extreme roadblocks to living a normal, healthy life due to measures to slow the spread of the virus – such as school, daycare and office closures, altered business hours and limited selection at supermarkets and pharmacies, the disruption of non-Covid related medical appointments.
Our Solace Nutrition family recognizes that the mito community we serve are likely among those suffering a little harder. As such, we hope this post offers support and comfort in this trying time.
Plan Covid-19 prevention and treatment with particularly sensitive and aggressive importance
As Covid – 19 is a novel coronavirus, there is a great deal of uncertainty shrouding the illness, its affects, and its most vulnerable subjects. Accordingly, it is not yet known whether specific mitochondrial diseases pose a greater risk for contracting the disease, and if afflicted, a more serious case of the virus. However, it is reasonable that adults and children with mitochondrial diseases assume they are more at risk, as they are medically compromised individuals. Further, symptoms associated with a variety of mitochondrial diseases, such as restricted airflow, hydration issues, and the need for TPN or tube feeding may exasperate the symptoms of Covid-19 if contracted. Whatever the conditions or symptoms a mito patient displays, it is imperative to consult medical professionals for advice based on individual mito conditions, symptoms and needs.
Treating virus prevention and treatment particularly sensitively and aggressively means staying informed with CDC and WHO resources and abiding by their recommendations, and addressing symptoms early with proper medical attention. One way to reduce exposure is to take advantage of food and grocery delivery whenever possible, such as with Uber Eats, Grub Hub and Instacart. If ordering through Instacart, we recommend placing your order several days in advance of when you would need the items, as orders are very likely backed up, and scheduling the orders proactively every few days, so there is no need to leave out of necessity.
For a deeper insight into dealing with a mitochondrial disease amidst this global pandemic, we recommend checking out a recording of the United Mitochondrial Disease Foundation’s webinar, “Ask the Mito Doctor: Coronavirus,” which you can find at this link.
Maintain proactive and reactive communication with healthcare professionals and resources
With plans for reopening across the country largely tentative and gradual, and a sense of normalcy even further off, it’s another reminder to be prepared to live with the current conditions for an extended period. If you haven’t already, proactively reach out to your consulted healthcare professionals to discuss how to proceed with upcoming appointments, adjustments to your routines, and advanced fills for your prescriptions. When possible, proceed with your healthcare appointments through telemedicine channels and have your prescriptions delivered.
On these notes, we’d like to highlight that our Solace Nutrition team remains working in our normal hours with heightened sanitation and health protocols, able to answer any queries and distribute products.
It’s also important to address medical concerns as soon as they arise; non-Covid related medical appointments have decreased in this period, likely due to individuals wishing to diminish the chance of exposure to the virus. While this remains a sound tactic for issues that are not urgent or an emergency, it is important to address concerns that are emergencies. If there is any question at all as to whether an issue is an emergency requiring urgent attention, contact medical professionals.
Consider seeking out mental health support and treatment
With so much uncertainty and risk involved in our new normal, it is not unusual that a person’s mental health may be suffering. Individuals may be experiencing issues, like anxiety, for the first time, and others, with preexisting mental health disorders, such as anxiety, depression, and substance abuse issues, may find this period particularly difficult to cope with. At Solace, we recognize that this may be an exceptionally challenging and polarizing time for parents and families new to dealing with a mito diagnoses.
Do not be afraid to seek out support or treatment proactively, prioritize issues as they arise, and remember it is never too late to address concerns. Our first recommendation is always to contact a licensed healthcare professional for mental health concerns. At this moment, telemedicine for mental health services is likely an option.
Additionally, look into support groups organized through Zoom or conference calls. For general tips, the CDC’s website offers some guidance and resources on coping with stress and daily life on their website, which you can find here. For those affected with a mito diagnosis in particular, we recommend checking out Mito Action’s weekly support calls, which you can find more information on here.
Work to maintain as much normalcy in your routine as possible
We are all experiencing a completely unprecedented period, making our days anything but normal. For our mito community, however, routine is one of the keys to living days healthily and in control. As such, we recommend sticking as much as possible to your regular routines; keep up with physical activity, sleep schedules, mealtime rituals. Maintaining a proper diet, in particular, is vital to flourishing with a mito diagnosis. This increased time at home makes unhealthy food options and increased snacking easier, but it is imperative to stick with the diet that complies with your medical needs.
For mito kids that typically necessitate additional resources, such as physical therapy or educational support in school, push to keep this as consistent as before. And do not be afraid to be vocal with these service providers if you believe that the modified way this support is being offered isn’t supportive enough.