Jan 15, 2009
Other Authors
I just wanted to state that if anyone else is interested in becoming an author on this blog, comment to this post with your email and you are in. I'm no control freak but as long as the posts are respectful it's an open forum. What do you have to say about cylindromatosis? Are your parents affected? What's going on with the topical aspirin story?
Ongoing Research
Alright, since I'm no longer just posting things for myself...
First off, the bad. From my experience, far and away the best treatment for cylindromas, trichoeps, and spiros is surgical removal. Frustrating! Especially for the patient who has to go and have them removed every year. As far as I know, there are no interventional clinical trials in BSS as of yet. However, I do see patients with my much wiser and older boss at the National Cancer Institute. I'll make another posting about the study in the future.
Also, I'm working on a review article on BSS and the CYLD gene which should be out in the next 2 months or so, barring mass rejection by the genetics or oncology (cancer) journals. I'll post it when published.
First off, the bad. From my experience, far and away the best treatment for cylindromas, trichoeps, and spiros is surgical removal. Frustrating! Especially for the patient who has to go and have them removed every year. As far as I know, there are no interventional clinical trials in BSS as of yet. However, I do see patients with my much wiser and older boss at the National Cancer Institute. I'll make another posting about the study in the future.
Also, I'm working on a review article on BSS and the CYLD gene which should be out in the next 2 months or so, barring mass rejection by the genetics or oncology (cancer) journals. I'll post it when published.
Dec 17, 2008
My work in BSS
I realize that I should tell potential readers how I got interested in BSS. I have always been interested in genetics and cancer. There are a lot of genetic syndromes that result in a predisposition to cancer. BSS is sort of unusual in that the mutated gene, CYLD, is involved in several very important biological pathways but BSS patients only have a problem in their skin, to our knowledge. I like studying BSS because the patients I have interacted with are wonderful people- and doing research that benefits people I can relate to only motivates me further.
Alright I am going to pipe down but I hope some of you out there find my site!
-Patrick
Alright I am going to pipe down but I hope some of you out there find my site!
-Patrick
New Research
Hi all,
Some good news to start us out. It seems from the patients I have talked to that many patients are unaware that a lot of research is being conducted that is relevant to Brooke-Spiegler syndrome (BSS). I am going to post a list of related articles one of these days.
Some good news to start us out. It seems from the patients I have talked to that many patients are unaware that a lot of research is being conducted that is relevant to Brooke-Spiegler syndrome (BSS). I am going to post a list of related articles one of these days.
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