Monthly Archives: January 2017

Month 25 – January

 

Well ,it’s now been 2 years since I stopped taking TCS. My life has changed a lot in that time. I’ve tried numerous diets, right now I seem to have settled on the Ketogenic diet. It’s a high fat, low carb diet that eliminates grains, sugars and potatoes more than anything. I’ve only been doing it for a month, and it’s a bit early to say, but I think it has helped a lot in reducing inflammation in my body overall. The oozing on my face and hands has pretty much stopped, which has a huge effect on my overall mood. When your face is oozing disgusting fluid all the time, it really saps any self esteem you may have accumulated and generally makes you want to dig a hole and hide in it until your face magically clears up. All things considered, I’m still very red on my face, neck, arms and legs (around the joint areas) but my skin feels more resilient than it has in a long time and sometimes even feels like normal skin when I’m properly moisturized and hydrated. Another thing that I think has been helping, my hands at least, is that I’ve started putting aloe vera oil on hands and then sealing it in with my beeswax jojo-balm. It’s really helped in reducing inflammation and healing up the cracks that form on my hands.

Overall, these last 2 years have been a period of complete transformation for me. From what I eat to how I sleep and take care of myself, I’ve really had to make my psychical and mental health the main priority in my life. I’m also very fortunate to have such a supportive girlfriend that has stuck by me this whole time and suffered with me and made my health a priority as much as I have. I’m truly blessed and eternally grateful to her for being so strong and so accommodating to my circumstances. I see people online all the time saying how their partners can’t handle this, and I can understand why; it pretty much completely robs a person of their self esteem, confidence and leaves them an anxiety riddled mess, as least in my situation. But she has stayed with me despite my looking like I have contacted greyscale. Trying not to get too sappy here but she’s definitely the best thing that has ever happened to me and has been the MOST important thing in my road to healing.

Scientific articles & TSW related videos

Here is a list with links to some of the best scientific literature and videos I have found on TSW.

It’s good to have some evidence when talking to doctors and it’s also a wise to know how to communicate in their language.

This may also be helpful to convince skeptical friends or family members, if you have any.

(Personally the only people I’ve had a hard time selling the idea that I’m suffering from TSW have been doctors and derms.)

ITSAN Overview on TSA/TSW/RSS

This was the video that made me realize what I was dealing with. Short video that pretty much gives you the broad strokes of this condition.

Current hypothesis in atopic dermatitis and red skin syndrome

This one is a little dry but does a great job of outlining the current hypothesis behind what causes rss and why. It’s made by a guy that has a Ph.D in immunology of allergies at McGill University. He also has a gofundme which could use some support.

Topical steroid addiction in atopic dermatitis

This paper is one of the most complete medical papers I have found on TSW/RSS. There are also a lot of great links in the reference section.

White Paper on Steroid Addiction by Dr. Marvin Rapaport

Dr. Rapaport has been one of, if not the, biggest dermatological proponents of RSS. He has a lot of great blog posts on his website relating to TSW/RSS.

Improvement of Atopic Dermatitis After Discontinuation of Topical Corticosteroid Treatment

This one is behind a pay wall but there is a  brief overview of the study and a preview of the first few pages of paper.

DermNet New Zealand

A great resource for all things skin related. Here is their write up on TSW.

A prospective study of atopic dermatitis managed without topical corticosteroids for a 6-month period

This study included over 350 people and it showed that allowing atopic dermatitis to heal on it’s own over a six month period actually had better results than using TCS over the same amount of time.

Histological and Immunohistological Findings Using Anti-Cortisol Antibody in Atopic Dermatitis with Topical Steroid Addiction

This is also a great paper that has a lot of pictures of skin samples that highlight, pretty clearly, what a weakened skin barrier looks like.

BONUS

Every doctor appointment ever

This video pretty much sums up every consult I’ve had with dermatologists over the 2 year period that I’ve been battling this condition. Maybe you can avoid this meeting by showing your doctor some of these resources.