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07/03/2011 08:30 AM

Just Diagnosed with Keratosis Follicularis

lilbearcub11
lilbearcub11  
Posts: 8
Member

Just Being Diagnosed with DD is a Shocker in one sense Just trying to express my Feelings Cause no one Seems to understand I guess unless you have this you wouldn't

I have been struggling with mis diagnoses for 29 years and feel I am needing some help in the head at this point Can Anyone Help Me ??

Post edited by: lilbearcub11, at: 07/03/2011 08:32 AM

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07/12/2011 07:28 AM
Tmoss
Tmoss  
Posts: 5
Member

Well, I'm not sure if I can help, but I understand the "joy" of Darier's Disease. I am not sure what you go through or what your symptoms are. I get blood blisters on my hands all the time. I have a patch of papules on my neck pretty much year round and have several major flare ups. I don't let my disease rule my life and sometimes that makes my dad yell at me. My mom and brother have this disease also. Mom is a lot worse as far as flare ups, but my hands are worse. Brother is the best out of all of us, but he gets the heat related patches more often because of his job. The best thing I have found is keep hydrated, if outside wear a high SPF sunscreen, don't try new soaps or cleaners if you already have something that works. And most of all don't let your doctor tell you stuff, if you don't think it is right, question him/her, if they can't give you a good reason, go somewhere else.

07/12/2011 08:23 AM
lilbearcub11
lilbearcub11  
Posts: 8
Member

I am Doing better by staying out of the sun and taking lots of vitamin c, I had to take prednisone twice and that med is terrible when you have a hyper personality

very little itching now so I am hoping I can keep it at bay now that I know what it is and how it control some of it

I have to get adjusted to all of this since too I have been a worker bee all of my life.I May have to move to a cooler climate but unable to do so at this Time

Thanks for the Comments, its just nice to talk to some one who understands what it is your going thru with this disease


07/15/2011 07:34 AM
Tmoss
Tmoss  
Posts: 5
Member

I have had to take prednisone too. It doesn't seem too bad for me.

I may have to get adjust my life in certain ways so that I can keep active. .I live in Kansas and I hate the cooler climate in winter. If it could stay 80 year round I'd be happy. The extreme heat is bad for me, but the extreme cold is just as bad for me. When it is cold my skin cracks if I don't hydrate myself and put lotion an like 20 times a day.

No problem, its is nice to talk to some one who understands. I am here for you. I'm not on the site very often, but you can reach me at tmoss@ci3.com pretty much anytime.

God bless you and may you have a good skin day Smile


10/03/2011 01:36 PM
william1950
 
Posts: 5
New Member

Know the feeling, live in south Louisiana hot and humid I am going through a very bad flare up and i am trying to stay positve. Hoping that you don't have any flare ups
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