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Always Researching
Tamara K.

Well hello Ed.  What can I say except I am totally amazed at your site.  You have made a desperate woman laugh out loud today! 

I am 30 years old and have had P for 15 years and PA for 7.  I am currently pregnant with my third child and because of that, am not on any treatment currently.  I have heard all the wonderful talk of P getting better with pregnancy due to the slight suppression of the immune system, but for me it never went that way.  Mine always got worse. 

So, right now I am in a flare with both my P and PA and am pretty miserable.  Having your wonderful site to look at and laughing with the other "Flakers" today has made me feel so much better.  So, I guess I am writing you to thank you very much for all you do.  I am spending a lot of time right now researching, trying to learn more and educate myself further on treatment plans while I await the baby (even though I find, now after 15 years living with the disease, that I know more than most docs of all specialties including derms, and rheumies).  Thanks again, -Tamara

*****

Ed’s Response:  You’re most welcome, Tamara.  I hope you keep visiting and keep finding things that make you laugh.

I know what you mean about docs and feeling we know as much or more than they.  I went to a few derms before I settled on the one I have now, and two of the reasons I’ve stayed with this group are:  (1) when they don’t know they say so and (2) tell me how they intend to reach out and discover the answer we’re looking for.  I know they’re sincere about research on my behalf.  They’ve sent me emails with some of the research results attached — including snippets of chat room transcripts where they’ve posed our question to a group of derms from around the country.

One of the things I’ve always wished I could do here at FlakeHQ is interview a new, well-liked derm for each update.  I’ve received a lot of email from people praising their derms — and it’s usually for reasons similar to why I praise mine: a willingness to go find answers.

What I’ve come to look for in a derm — any derm, whether they’ll be treating me or not — is the following:

  • An awareness of current P treatments (biologics, narrowband light therapies)

  • Experience treating all kinds of P at all levels of involvement (from mild to severe)

  • A willingness to say straight-away that treatment — until there is a cure — is a lifetime undertaking and nothing is going to work forever

  • A willingness to listen to my thoughts, concerns and desires regarding treatments — especially listen to my history and don’t suggest I retry something I know won’t work

  • A willingness to work with me when/if I wish to try alternative therapies (diet, OTC remedies, whatever)

  • A willingness to work with my other doctors should circumstances ever require it.

Stay in touch, Tamara.  -Ed

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