I have diagnosed myself with Schamberg’s disease. This is not for reasons of hypochondria or making things seem worse than they really are – it’s because the doctors I have seen for this mystery rash over the past three years have proved themselves to be utterly useless. The Internet, however, has come through for me yet again. Lovely Internet.
Anyway, knowing how much I’ve valued any scrap of information about this, any personal experience, and any photo of the condition, here’s my experience. I hope it’s useful to someone.
December 2006: I noticed a small patch about half an inch in diameter on the top of my right foot, near my toes. It looked like a rash, but it was an orange-brown colour, almost rusty; it didn’t fade under pressure; it didn’t itch, and it wasn’t flaky in any way. It looked like it was under my skin. Like every other potential ailment, I completely ignored it. For a year.
It got bigger.
December 2007: The patch now covered an area a couple of inches square. Still no symptoms – if I never, ever looked at my feet, I would have no idea it was there. However, it now had some brothers forming around my ankle – both sides – and also on top in the crease where my foot joined my leg. I ignored it.
March 2008: I go to the doctor with an ear infection and while I’m there I get my foot out and ask what’s going on. He looks confused. He diagnoses an allergy to something, most likely to washing powder. We both knew he didn’t have a clue, really, but seeing as I was ignoring it anyway, I didn’t mind.
June 2008: Brown patch mayhem, as the ‘rash’ spread up my shin – and started to make an appearance on the top of my right foot as well. I decided to give the pharmacist a try, who took me into a little diagnosis room (cupboard), looked at my sandled foot, rubbed his beard, and charged me a lot of money for a very small tube of fungicide cream.
This made no difference.
I went back to the doctor. He pretty much shrugged. It wasn’t itching or causing me any physical distress, so…well, *shrug*, I guess.
July 2008: With brown speckled patches now running over both feet, both ankles and both shins, I was starting to get a bit miserable. Still not worried – just miserable. I just hated the way it looked. I tried sun, no sun, no shaving, eczema cream, treating all my shoes and clothes and bedding with anti fungal stuff, and massage. None of it made any difference. I made an effort to see if anything made it worse, and it seemed that after a bath or shower the patches were brighter and had a redder tinge. That didn’t really tell me anything though, as most of me went red in the bath.
I admitted defeat and made an appointment with a doctor. A breakthrough! His diagnosis: I was rusting. Iron was leaking from my blood cells and through my veins, and gravity was making it gather around my ankles and shins.
Slightly dumbfounded, I repeated “I’m rusting?”, while the doctor, satisfied that he had made a diagnosis and was ready for the next patient, printed me out a prescription for a mild steroid cream which I was to apply sparingly every evening.
Well, it seemed promising. Weird, but promising.
But something didn’t seem right. I couldn’t accept that I was simply rusting and it was gathering around my lower joints – I had never, ever heard of this happening before. Ever. To anyone. Ever. More importantly, after three weeks of regular use, the steroid cream was doing nothing at all.
I started researching skin conditions online, especially of the feet and lower limbs, clicking on page after page of rashes, sores, fungal infections – with some pretty stomach-turning sights along the way – and searching for every combination of words I could think of to try to find anything to do with leaking blood cells, and rusting skin. No luck whatsoever. In the meantime, the patches seemed to stabilise, but certainly not lessen in any way.
March 2010: I was watching a tv show on Channel 4, laptop on my knees as usual, when a woman came on with a skin complaint – nothing like mine (it was a type of psoriasis) but the narrator said something about being able to look up more skin complaints online. Worth a try, I though.
And there it was. I just stumbled across it by chance. Lichen Aureus.
Finally I had something to go on. It didn’t look exactly the same as my condition, but it was the closest I’d seen. Time to do a little more research…
I found this page. See the guy’s ankle on the lower right? That’s what mine look like. Reading on, I found the description for Schamberg’s disease. Bingo, I thought. My research switched to that.
More pages, more photos, but I am satisfied that this is the condition I have. And now all I have to do is go back to the doctor and tell him. Maybe. I’m not sure he deserves to know. I’m mad at him for never making a referral to a dermatologist at least, although going on what other people have said, even they shrug and just prescribe steroid creams with the advice that “this won’t work”.
So. Cure? Any hope? No, in a word – certainly not by prescription medicine anyway. There is some research, however, that certain bioflavonoids taken in supplement form may help, as they can strengthen cells and veins. On this basis, today I’ve started taking the generally recommended Quercetin (naturally occurring bioflavonoid) and Bromelain (an enzyme found in pineapple stems that aids absorption) as a combined supplement. I’m taking 1g a day, which seems to be the maximum dose recommended. I’m going to monitor the sexy rusty rash over the next two weeks and will update accordingly…
Oh, and my feet? See below. The patches are darker than they appear, I think the flash lit me up a bit too much. I also have this all up my shins – but my legs are hairy today, so no photos of those, I do have some standards…though admittedly they’re not high enough to actually shave my legs.
UPDATE – 6 MONTHS LATER (WHAT? I’VE BEEN BUSY…)
Well, unfortunately, I never saw a difference in my feet or legs after taking the Quercetin for a month. Maybe you need to take it for a long, long time to help, but it seems quite expensive for an unlikely cure. It doesn’t seem to have gotten any worse in the past six months though.
So that’s me out of ideas. Anyone else got anything?