Thursday, July 9, 2015

I was recently contacted by Discovery Channel and Betty to see if anyone in our community would like to share their story:



The message I received from Jessica: 

The documentary we are making will follow single men and women who feel that their love lives have been affected by a medical or physical condition and as a result may not feel entirely comfortable with being open about their condition when they first meet people. We would like bring a bit of awareness to skin conditions, such as psoriasis, keloid scarring, vitiligo and eczema.  I understand that a lot of these conditions are hard to deal with because there is no simple cure and individuals may have to live with a condition for their entire life.  I wondered if anyone from the UK ever got in touch with you about Darier’s disease? Darier’s disease isn’t something we have previously featured, and it would be great to provide some awareness to a new condition.


I'm intrigued, aren't you? I think sharing our stories is necessary to end stigma and create community! I hope you message her :)




2 comments:

  1. Hi, I just found your page by accident. I too have dairers disease, diagnosed fall of 2014. I will be 32 this month. I have a very rare form of the disease where my skin folds heal the opposite direction which makes it painful. Trying to explain the disease to the public is challenging because some people think you can catch it like schingles. Thanks for the blog and I will keep up on your posts. If I can be of any help for science let me know. I can't help in the dating world bc I'm married. I am researching the benefits of coconut oil for now to see if it will help heal me. I've got breakouts on my neck, armpit and newly the crease of my leg and arms by knee and elows. GOD Bless You , Rebecca

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    Replies
    1. Hey Rebecca, nice to meet you!
      I highly recommend the pine bark and B & D as that has worked really well for me. I have been bad at keeping Omega and zinc at higher levels but moved to a multi-vit for women.

      I haven't been posting regularly because there is nothing to report! I still have it, it's there, the struggle is real and the daily grind of it hasn't changed.

      I get them on my sides/abdominal area lightly, thighs lightly, neck and back heavily. I love love love my Vit A cream and otherwise it's an avoidance of triggers (like sunshine, dairy, lots of alcohol, and the ever present stress.)

      I hope this finds you well and please let me know if you want to write a guest blog about what you have tried/know/are going through with DWD!

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