Darier Disease - Looking For Help

[Sully1234]

Looking for assistance from anyone with knowledge of treating Darier Disease.

A close buddy is struggling - half his chest is covered and really effects his self esteem, social life, cant date because he doesn't want women to see etc.

He has tried all the traditional meds IE topical creams and oral retinoids.

Has done a gene study and does have the gene. HOWEVER, he hasnt struggled with this all his life. Its more of a recent thing. So I think it can be managed.

He is stressed and eats normal American diet.


I want to recommend him the below:

-Carnivore diet (minimize any inflammatory crap he's putting in his body)
-C Reactive Protein Test (see if there's systemic inflammation triggering it)
-GLOW or KLOW (reduce inflammation and heal skin)


Any assistance would really be appreciated!

 

[Stewie]

Look into chemical chaperones. Darier disrupts intracellular calcium handling and protein folding in the endoplasmic reticulum.

TUDCA orally may help as it's a chemical chaperone. He could possibly try a transdermal mixture on a small area with TUDCA and DMSO. It may serve as a chemical chaperone topically. Pure speculation on my behalf. I wouldn't bath in it.

 

[AllLoadedUp]

Looking for assistance from anyone with knowledge of treating Darier Disease.

A close buddy is struggling - half his chest is covered and really effects his self esteem, social life, cant date because he doesn't want women to see etc.

He has tried all the traditional meds IE topical creams and oral retinoids.

Has done a gene study and does have the gene. HOWEVER, he hasnt struggled with this all his life. Its more of a recent thing. So I think it can be managed.

He is stressed and eats normal American diet.


I want to recommend him the below:

-Carnivore diet (minimize any inflammatory crap he's putting in his body)
-C Reactive Protein Test (see if there's systemic inflammation triggering it)
-GLOW or KLOW (reduce inflammation and heal skin)


Any assistance would really be appreciated!

I had to look it up. Never heard of that before. Pictures I saw are rough. Truly hope he can get it better. Says heat and humidity can cause it. How the hell do you avoid those unless you live in Greenland? Not to mention if you workout. As I'm sure you know it says can cause Depression. Keep an eye on him. Let us know if he gets it figured out. I'd be interested in knowing. Had never even heard of it until you posted this.

 

[mexbeast]

I'm Sorry he's going through that!
I had some skin condition for over 20 years and tried this, and i was surprised how well it helped. He may want to try it, you can find it in some Mexican stores!

 

[AllOkJumpmaster]

I agree with what you suggested with carnivor, it might not be the best / most healthy diet, especially not for bodybuilding, but I have known a number of people that have healed inflammatory conditions, especially skin conditions using it. Fasting also *can* be helpful, but that is a bit more individual response type of deal, and also may not be something he can comfortably include in his lifestyle.

 

[Siggy]

Darier is one thing but what you really want to avoid is Derriere disease. Shits a bitch.

 

[Sully1234]

Look into chemical chaperones. Darier disrupts intracellular calcium handling and protein folding in the endoplasmic reticulum.

TUDCA orally may help as it's a chemical chaperone. He could possibly try a transdermal mixture on a small area with TUDCA and DMSO. It may serve as a chemical chaperone topically. Pure speculation on my behalf. I wouldn't bath in it.

I appreciate that. I wanted to do some decent research before I responded...

I got more information and apparently the way he has been treated has been with Bactrim. Which apparently works. So at first I thought it wasnt Darier. But Bactrim is used to treat the sides of a break out.

Been on it for 7 of last 9 months smh.

Took two weeks of yelling at him but finally started taking TUDCA. Seems to be helping but we will see.

Found this as well, not sure how likely to get a script though. https://pubmed.ncbi.nlm.nih.gov/39060641/ (Dantrolene).

4-PBA may be an option as well but again a script needed.