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About ejtauri

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  1. I received my home UVA-1 Photo Therapy unit yesterday. I can't wait to get started. However, there is a bit of confusion over dosage protocol that I'm waiting to clear up with the Dermatologists at Mayo Clinic before actually starting the treatment. I spoke to someone at Mayo today (she has several patients that use the Mayo machine) that is going to sort it out for me, and she also gave me advice and instructions on proper technique to bathe in the radiation and not cause harm. With my unit (National Biological Panasol 3D UVA-1) I'm supposed to stand 8 inches away from the bulbs for a set amount of time and cover the body parts that aren't affected by the PSM. For me, that's my face and groin. She actually advised to wear a paper sack on my head (yeah, no kidding) and some swimming trunks like a Speedo (no pics of me!). Also, the dosage protocol is to start off with minimal dosage and increase dosage by 10 seconds each time 3 to five times per week. The goal is to work your way up to a maximum value that is just short of giving you a sunburn effect. The goal is to find that max value and keep repeating treatments for an extended period of time. If you burn yourself, you are supposed to dial back the setting on next treatment until it doesn't burn. Plus, if you intend to go outside and get sun exposure, then good sunscreen is required or else you may burn easily. I've had lots of comments on other posts (Facebook) where people complained of burning. If this happens your dosage was too high for your skin type.
  2. Thanks all. I have an appointment with a dermatologist in Dallas that is an expert in Morphea and UVA1 photo therapy. I'm also in the process of ordering my home UVA1 unit, so I'm hoping it helps.
  3. Hi all, I was just diagnosed by the Mayo Clinic with an extremely rare disease called Pansclerotic Morphea. I just confirmed how rare it is by searching this blog and only came up with one thread. If it was anywhere you would think it would be here. Anyway, the recommended treatment right now is with Prednisone, CellCept, and UVA1 photo therapy. I'm in the process of acquiring a home light unit, but in the meantime I'm considering treatment at a University hospital down in Dallas (UTSouthwestern). Does anyone know of any UVA1 treatment facilities closer to Tulsa, OK? I can't seem to find any by Google searches. Thanks! Eric
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