Mayo Clinic contact info

Posted by sharonmcmillan @sharonmcmillan, May 12 9:45am

Here is a dscription of my daughter's symptoms:
-post-covid multisystem illness, immune dysregulation/dysfunction since sept/23
-Pots/dysautonomia (under control with drug, lifestyle, electrolytes)
-Fatigue
-skin rashes which escalated after clinical trial of pentoxafylline at UHN - Toronto in March/25 - now for over a year has perforating dermatosis (biopsy proven), severe episodic edema/fluid leakage, tongue swelling, steroid responsiveness, pruritus, fluctuating inflammatory flares
-medication hypersensitivity
-immune and other testing non diagnostic to date (awaiting biopsy with immunoflourescence)

What we need:
-someone who owns the whole systemic picture, integrative/not a siloed approach, treat as overlapping syndromes (potentially include MCAS), complex chronic illness treatment iteration, ongoing clinical followup and coordination
-do not require perfect standard biomarkers, broader testing
-note we have senior derm access at UHN (undergoing phototherapy for comfort, not resolution)
Please provide specific contact info at Mayo clinic??
Travel only when required, telemedicine to Toronto

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

@sharonmcmillan
For Canadian residents, I suggest you start with the Mayo Clinic Representative Office in Canada. A Canadian patient advocate can assist Canadian patients who wish to schedule appointments at one of the Mayo Clinic's three locations in the United States. They will also be able to answer whether telemedicine is an option.
https://www.mayoclinic.org/international/support/representative-offices/canada

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