I have been like a dog with a bone trying to get to the bottom of the CTP/Skin substitute quagmire, but I don’t want to lose sight of other important things. A few months ago, I heard Suzanne Molony give a presentation at a conference and I thought, “Everyone should hear her story.” Brian McCurdy from HMP interviewed her – you can listen to it or read the transcript here.
Suzanne is the founder and CEO of a company called EDD Solutions focused on wound care products specifically for patients with hidradenitis suppurativa (HS). She understands this issue, because she has HS herself. It’s wrenching to hear about the years she suffered without a diagnosis – starting at age 13 – with a lot of operations and failed treatments before she was finally seen by a clinician who diagnosed her properly. HS is embarrassing (besides being painful). There’s no other way to describe chronic problems in one’s groin, buttocks, axillae, or breasts. As a clinician, I know these patients make my heart sink because they are not really “healed” so much as “managed.” (Do check out Dr. Stillerman’s “How I Treat” article in TWC). The dressing industry has more choices available than a clinician can even keep track of, but none of them are very well designed for these awkward, intertriginous areas.
It’s another example of someone who has taken the experience of a horrible disease and tried to make things better for others. I have diagnosed HS patients in their 50’s who had seen many doctors without getting a diagnosis. Suzanne’s interview brings home the patient experience of this awful problem and is another example of why we need to do a better job publicizing the “journey” and lived experience of our patients.