VMP Genetics provides the diagnosis and management of children and adults with rare genetic disorders, whether through direct patient care or physician support services. Genetics is an ever evolving field, as well as VMP. Please check back often as we continue to update our website.
The following are resources you can access to stay up to date with information. Of course it is not a complete listing, but they are the ones we are using to stay abreast of information.
Get the latest public health information from CDC: www.coronavirus.gov
Get the latest research information from NIH: www.nih.gov/coronavirus
Latest official information from the Coronavirus (COVID-19) Task Force: www.coronavirus.gov/
Where to get tested. Limited states but they are being added. Includes GA: www.cvs.com/minuteclinic/covid-19-testing
Dr Kendall, as part of a panel of experts, address patients & other professionals in a UMDF podcast: www.umdf.org/coronavirus
Number of resources from the Ehlers Danlos Society: www.ehlers-danlos.com/covid-19-update
Helpful Resources for the Rare Disease Community Around COVID-19: www.rareiscommunity.com
VMP Genetics Direct Patient Care is led by a pioneer in the field, Dr Fran Kendall. Direct Patient Care specializes in children & adults from around the world with mitochondrial disorders, ehlers-danlos syndromes, connective tissue disorders, rare genetic, metabolic, & inherited disorders completely independent from the politics of large institutions and
VMP Genetics Education Services is led by Dr Mark Korson. Education Services create and provide innovative teaching approaches to healthcare providers so they may so they may participate more confidently in the diagnosis and
VMP Genetics Physician Support Services is led by Dr Mark Korson. Physician Support Services providing on-call metabolic diagnosis and management assistance to hospitals and institutions through the use of
Many are asking questions about the vaccine. An excellent source of information is from the CDC, the White House Coronavirus Task Force, the NIH, or your local community health department.
From our perspective on December 14th, 2020 and as a general rule, the mitochondrial and other chronic complex disease patients we personally follow who have contracted COVID are getting sicker and requiring more intervention than their age matched controls. This finding is consistent with a study looking at Down syndrome patients who similarly developed more severe problems at younger ages. Of note, one of my adult patients has developed long COVID syndrome with fatigue, concentration and focusing issues and worsening autonomic problems following his recovery from active infection.
In regards to the reaction to the vaccine, one of our patients who participated in the Moderna trial developed 103F fever, was sick for days, but fully recovered within a week. As is consistent with other reports, these patients are developing a mild COVID phenotype. That is the extend of the data I have to date from our patients.
Those patients who are critically ill or very unstable baseline (intractable seizures that worsen with illness, for example) may wish to defer the vaccine in initial phases to prevent decompensation from the onset of a COVID phenotype post immunization. Other more stable patients may consider their general exposure risk (i.e. are they in health care or work in the critical supply chain) in the context of their health issues, the mental and physical fatigue of isolation, their age, and previous response to immunizations and illness. Unfortunately, there are no other clear guidelines available at this time as this is an evolving process and comments and recommendations may be modified over time. Nonetheless, ultimately the decision to receive the vaccination is up to you, the patient and the family. We, the medical community, are here only to provide you with the information as we know and understand the information at any given time.
Fran D. Kendall, M.D.
The key for those with mito that may have the flu or other viral illness such as a cold is to be aggressive with treatment. The flu and colds will sap energy and whatever can be done to either provide increased energy or to prevent energy being consumed will help. As with all children or adults with fevers, fever control and fluids are necessary to prevent dehydration. Allow plenty of rest. If you or your child are unable to control fever or maintain hydration by mouth (or by G or J tube) contact your local primary care provider or be evaluated in your local ER since additional intravenous fluids, fever management medications or blood work may be necessary to prevent complications and allow a rapid return to one’s usual state of health.