Hi everyone, I’m glad to finally be able to reach out to others like me with Degos disease.

My name is Julia Forsberg, I am a 22-year-old Australian girl living in Brisbane, and on November 6, 2013, I was officially diagnosed with Degos disease. Since I was diagnosed recently, my current emotional state is unstable and unpredictable.

The struggle for this diagnosis was almost a year long. I had tried everything, steroid creams, elimination diets, supplements, detox, naturopathy, oils, but those infamous lesions kept appearing. 

A dermatologist had to be convinced that I had ‘extragenital lichen sclerosus,’ and he had me attend UVB therapy three times a week for almost three months. Well, what a waste of time that was. 

After countless tear-filled sessions with my very caring GP, she referred me to another dermatologist who she believed to be much more experienced. 

He certainly was experienced. On his first look at me, he said: “Well, I haven’t thought about this condition in quite some time, but I believe it to be Degos Disease. You know how many times I’ve seen something like this in all my 35 years of practice, Julia? Once.”

The devastation didn’t begin until my family and I learned more about the condition. 

Then, well, you all know what that probably feels like, I don’t like thinking about it. 

I had recently graduated from acting school, and was about to commence my first professional theater season, when this bomb blasted itself into my reality. 

My world changed forever. 

Before the Degos disease, I suffered from an anxiety disorder, but for a few months had successfully not needed anti-depressants. Unfortunately, and to my greatest disappointment, I am back on them.

However, it’s been almost two months since my diagnosis, and things are looking up. My new dermatologist has personally introduced me to a great deal of other dermatologists in Brisbane. 

Both he, and my gastrologist, are pleased to confirm that my recent joint colonoscopy and endoscopy proved that I was clear of any internal lesions (at least, inside the intestine). 

My gastrologist believes that the risks of a laparoscopy outweigh my need to have one (as I do not currently suffer any abdominal pain). Additionally, I have been taking Aspirin 300mg for about six weeks now and am finally starting to see results, the lesions have halted (almost) and the old ones are ever so slowly fading. 

I currently have about 40–50 lesions all over my body.

It feels so good to let this out to others who I know will understand, and I cannot wait to hear from anyone with Degos disease, no matter where in the world you are. I admit that I am struggling with a bit of depression, since the diagnosis, I rarely go out besides work and I require constant comfort from my partner and family. It’s nice to let the load off here for a change.

My ideal goal is to find others in Australia like me. But I am absolutely looking forward to hearing from anyone and everyone.

Julia Forsberg