DSAP: A rare skin condition with no cure
Disseminated superficial actinic porokeratosis is a rare skin disease that leaves red rough itchy lesions on the arms and legs. At this time there is no cure for DSAP so those with the disease must learn to conceal and camouflage their spots if they want to wear clothing that reveals their skin.
While the condition does not lead to skin cancer, those with DSAP often feel embarrassed by the red spots all over their skin. Many avoid the sun altogether which translates to: no vacations to sunny destinations; no outdoor swimming, boating or outdoor sports and the choices of clothes are limited to long sleeves, long pages and long skirts.
Because DSAP is a rare disease, many dermatologists can’t diagnose it without a skin biopsy. And since it’s not life threatening, dermatologists tend to ‘blow it off’, and simply tell patients to stay out of the sun leaving patients with no hope. Even though it may largely be cosmetic it is also psychological as it inhibits what people wear, do and enjoy.
DSAP is an inherited condition, and there’s a 50% chance that a child of an affected parent will have DSAP. At the moment there are no tests available to test children for the gene, so it’s basically the luck of the draw. If a parent knew their child had the gene, that could be extra vigilant about sun screen and sun protective clothing.
There are many with the condition who don’t have relatives with DSAP (about 25% of patients), in these cases it’s brought out by accumulated sun exposure and possibly immune suppression. A person could have the gene, but if they never get sunburned then their DSAP spots may never be evident. According to a survey by the DSAP Institute, about 80% of patients state they have spent a lot of time in the sun and that sun makes their spots worse, not better.
Staying out of the sun is not a desirable (or realistic) solution from dermatologists and certainly not one that patients want to hear. There is a quality- of-life factor that dermatologists fail to recognize. And because it’s a rare disease dermatologists simply don’t have enough experience or exposure to the disease to better council their patients.
A much need resource for the DSAP community was recently launched online: The DSAP Institute which provides member support and information on managing DSAP.
The DSAP Institute’s mission is to raise awareness about this disease so that a cure can be found. It’s also a resource and community for people who have the disease to educate and share with each other what has worked and hasn’t worked. Check it out here: www.dsapinstitute.org
The DSAP Institute provides ways to manage their condition so they can live normal lives, so they can enjoy what the great outdoor has to offer.
There are a number of ways to manage DSAP so those suffering from the disease don’t have to hide. Some of these include:
- Concealers and camouflage makeup
- The Tazarotene and Fluorouracil Protocol
- Sun Protective Clothing
- Wart Remover Freeze Spray
- Lasers/Photodynamic therapy.
- Exfoliation, including use of wet/dry sandpaper
- Natural ingredients like manuka oil, colloidal silver, rosehip oil that help reduce redness
- Imiquimod cream.
- Tretinoin cream.
- Alpha hydroxy acid cream.
- Calcipotriol ointment.
- Oral acitretin.
- Online support groups
SUPPORT & INFORMATION
To learn more about the DSAP Institute visit www.dsapinstitute.org