Nov.27/23
🍁 Surgeon understands my VHL-demands!
These quotations below are from a presentation at the VHL Alliance Annual Family Weekend, 2022. It felt good to hear them because I don’t think I’ve ever heard a doctor talk like this!* They really described my physical battles with VHL tumours.
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“a lot of times, VHL patients need a number of procedures over their lifetimes and each one of these procedures can take a ‘little bit’ out of the patient - so how is that going to impact the patient in the long run…” 3:38
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“What we noticed is that many patients … were getting their care fractionated across many medical centers…
It was a challenge! So we thought it would be best to kind of formalize a very specific program that allowed a true multidisciplinary treatment for patients - because as all of you in the room that have VHL know - these genetic disorders can be highly complex…” 0:40 to 1:55
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“We focus on the whole patient…VHL patients we know are going to come in with often multiple issues going on simultaneously and they're going to have multiple issues going forward so the key is to think of the ‘long-term road map’ when you're assessing patients with hemangioblastomas and VHL…
Again, I want to emphasize that we want to ensure the optimal quality of life for our patients because VHL patients - you know- it's a lifetime disease! We want to keep you as high-functioning as possible and that's more than just treating one lesion…and then ‘that's it.’ It's managing the whole patient… “ 13:19 to 14:22
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*Treatment of VHL | Neurological Manifestations In Adults | Steven D. Chang, MD. VHL Alliance Family Weekend, Oct. 21-23, 2022
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