At 68 I’m learning to live with, and accept flabby thighs, a turkey neck, leathery skin and facial lines. Now, unfairly, I have a more distressing, unattractive and downright nasty-looking physical unattractiveness to tolerate; an ugly but painless generic skin condition on my legs and arms known as Disseminated Superficial Actinic Porokeratosis, or DSAP.
I noticed the first signs on my legs about 10 years ago. Brown and red lesions, dry scaly patches, and large slightly raised pink rings, spreading rapidly over the lower leg, then, to a lesser extent, my arms.
Naturally concerned, I showed my GP who misdiagnosed actinic keratosis (a very common misdiagnosis). She prescribed nasty topical creams which made not a jolt of difference. Nitrous oxide was applied to ‘burn them off’ – 33 in total. Nothing worked to reduce the spread or remove the lesions and pigmentation.
A visit to a skin specialist took 30 seconds (and $400) to diagnose DSAP; no hesitation, no doubt. I was so pleased to finally have a diagnosis! I presumed a treatment plan would follow. My mistake. I was told there is no known treatment, and there is nothing that will remove, fade or reduce the unsightly ugly splotches. Naturally I consulted Dr Google in the hope there must be something, but read ‘in clinical studies topical treatments were researched and tried, but no promising treatment was found’.
Disheartened, I realised I need to learn to live with this disfigurement and find coping strategies. I’ve been hiding my legs beneath trousers – no skirts, shorts or dresses – very tough during the summer months. With a yearning to wear pretty summer dresses I began to wear leg make-up and concealer to camouflage the worst of the marks. Sadly, although it made a slight difference, it is impossible to conceal totally.
I can only be thankful DSAP doesn’t affect the face, and my arms aren’t as marked as my legs, but I notice they are worsening gradually and obviously.
My research tells me this is a common condition especially after 40, and steadily increases with age. Both men and women can have DSAP.
With my new awareness I’ve noticed DSAP on others. I wonder if they have been correctly diagnosed, or mistakenly think they have ‘sun damage’. At a recent wedding, while chatting with a woman my age I noticed the tell-tale red, raised scaly marks on her wrists (other than her face, her only exposed skin). Bravely I showed her my identical marks, and asked her if she also had them on her legs. “Oh yes” she replied,” it’s caused by the sun. I’ve tried every cream possible but they won’t go away”. After comparing our skin, I was convinced she also had DSAP. She was stunned to know that many doctors and skin specialists she has consulted ill-informed and misdiagnosed her, prescribing useless lotions, potions and other treatments that had cost her heavily financially over many years.
I’d love to wear pretty feminine fashionable tops and dresses. I’d love to show-off toned tanned legs and arms once again. But I’m resigned to the fact those days are behind me. My vanity is such I do not want my badly marked skin to be on show.
DSAP isn’t contagious. Marked, scarred, damaged skin can be lived with. I’m grateful I have limbs that work. I’m grateful DSAP is not life-threatening. I’m grateful I’m still able to find fashionable clothing to hide my disfiguring skin.
I hope my story will be read by someone who recognises the symptoms I’ve described and can now stop looking for a treatment or cure. If you are a fellow sufferer let’s start a discussion to support and share with each other thoughts, feelings and coping strategies.
If you have been diagnosed with DSAP and have found a lotion, potion or other treatment that reduces the symptoms I’d love to hear from you.
Do you have any advice or solutions for Judi?
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