The Professor gave a talk, I suppose to answer some questions we all have about how we continue with treatment after she is no longer involved. I could not attend, but I fashioned Ann's fantastic notes into a blow by blow, and added my own notes from my talks with her. Thanks Ann.
I suppose there are different parts to her patients' curiosity about her legacy. Firstly the cream? Who will manufacture it? It has a used by date, can we stockpile it? What is someone else starts manufacturing it and changes the recipe? Adds Preservative? Aaaaaagggghhhh!
Another point would be the continued research. Who will do this. The Prof says she is "Scientist, not a business woman". Prof would like further funding for research into causes of the high levels of H2O2 (hydrogen peroxide) in vitiligo patients skin. Does not "want to beg" for funds.
An option would be to hand on her work to another scientist, but this is a complicated process to hand down to another dermatologist as they would be continuing another person's work, rather than building their own (she mentioned ego & ambition here). She has attempted to instigate this with a number of younger dermatologists but it was not successful.
The charges patients pay for Jordan trips covers expenses (hotel, food, transfers, etc). The Prof & Angela receive no financial compensation for their time in Jordan. The Profs dept operates as a charity. The Prof would be happy for patients to band together to organise fundraising for research. Govt grants are an option but very time consuming to prepare & likelihood of receiving a grant is low. Prof happy to accept tax deductible donations. Perhaps patients could instigate & manage?
Back to the cream issue... Ideal scenario is to "sell" PC KUS formulation to pharmaceutical Co to enable product to be widely available (with strict instructions re: application). Ingredients are currently public knowledge due to labelling, however the compounding process is complicated. The Prof is not prepared to sell below value.
Previous attempts to test & verify effectiveness of PC KUS (incl one in
Australia) were conducted incorrectly. One test conducted using a modified
formulation containing a preservative which impacted the effectiveness of
the PC KUS. Another was compounded correctly but trial was conducted
incorrectly (cant remember but think there was ineffective method of
administering light treatment to patients in central location). Company
admitted fault however "not very loudly", hence the available
research results show that pseudo catalase is ineffective for treating
vitiligo.
A little bit of history.
In the early 80's, the Prof went to study in the USA and discovered an enzyme that regulated the pigment in skin. This had applications for vitiligo, but she was not interested in vitiligo. A group of dermatologists from Hamburg were interested in her research and approached her to apply her findings to vitiligo but she said she was arrogant and replied that vitiligo is nothing to worry about. Just die your hair and put makeup on. Some time later, the Prof said that maybe she could help after all. The Prof told the Hamburg people that if they gathered 100 Vitiligo people for a study, she would come and work with them. They came through with the subjects, so she returned to Hamburg.
I need to find out the next chapter where she found that Vitiligo people have low level f the H2O2 in their skin. THe PC KUS cream (pseudo catalase) either puts H2O2 in, or stimulates this within vit people so that the skin will re-pigment. Light therapy has long been used to repigment short term, but without normalising the H2O2, the pigment will fade without continual narrowband UVB light (112nano m).
So, light therapy together with the cream, has longer lasting re-pigmentation.
I have so much more info written on little pieces of paper, in my head etc so I need to get it all down to share with the Vit-world.
Send me any questions... am here for you.
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