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Ehlers Danlos Syndrome, MCAS, POTS, and MALS

Bones, Joints & Muscles | Last Active: Mar 12 7:47pm | Replies (32)
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@shannev

I’m so sorry they haven’t been much help. I’m from Michigan and was sent to Mayo in Rochester in 2017 for my hEDS/cEDS diagnosis. I still have not had any genetic testing, but with my grandmother’s medical history and my own they didn’t need it.

I hope you are able to find a doctor/clinic that can help.

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Replies to "I’m so sorry they haven’t been much help. I’m from Michigan and was sent to Mayo..."
Colleen Young, Connect Director | @colleenyoung | Sep 4, 2022

Welcome, Shannon. That is helpful to know that you didn't have to go through genetic testing (or the cost) since your grandmother's medical history and you own diagnoses of hEDS/cEDS comfirmed the genetics.

Pharmacogenomics can be helpful for people with EDS. Pharmacogenomics— also known as pharmacogenetics or PGx — uses a person’s genetic information to predict the way they may react to a drug. It combines the sciences of pharmacology (study of drugs) and genetics (study of DNA/genes). People with hEDS often have challenges with medications and have unfavorable drug experiences because their genetic makeup prevents them from metabolizing some medications.

@macrdo @shannev @carolinebrown1995 @mhjs123 were pharmacogenetics ever discussed with you?

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