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Knowledgeable DSAP support
I've had DSAP for decades. It covers my arms and legs, and flares up with the slightest exposure to sunlight. I'm sick of dealing with doctors who know little about it, but it's rare enough that knowledge is hard to find. I'd love to learn of a support group or clinical research trial dealing with this disease. Is anyone aware of expertise in this area?
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I hope one of these databases or directories will provide the needed information.
Major databases and directories connect patients and families with rare disease support groups and advocacy organizations:
Top Databases and Directories
• National Organization for Rare Disorders (NORD): Features the NORD Organizational Database listing patient organizations providing free support, services, and disease-specific reports. NORD can also be reached via support hotline at 800-999-6673.
• Genetic and Rare Diseases Information Center (GARD): Run by the NIH/NCATS, GARD offers accessible information on rare and genetic conditions alongside specialist inquiry support to help connect patients with appropriate patient organizations.
• RareConnect: A platform hosted by EURORDIS that builds disease-specific online communities where people living with rare diseases can meet, share stories, and learn from others.
• Orphanet: A European and global reference portal that provides comprehensive scientific data, nomenclature, and directories of patient associations across multiple countries.
• Rare Diseases Clinical Research Network (RDCRN): Features a Contact Registry connecting patients to clinical studies, research consortia, and affiliated patient advocacy groups.
• Genetic Alliance: An online network connecting patients and genetic professionals with informational resources and disease-specific patient advocacy networks.
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1 ReactionGood morning
I don’t know what I have, but I have to be careful for the sun. It makes my skin burn and if I’m out there too long, I could get rashes and hives and black spots on my arm that won’t go away until I’m get out of the sun for a few months. I cover my arms, and I wear a big hat. And no shorts or anything to expose my legs
In fact, when I started having issues, I was working outside most of the time in the summer. The doctor told me I needed to get more sun. I wasn’t getting enough sun.
Actually, it was an allergy doctor in another state that figured it out. He told me I had “photodermatitis”
He told me what to do and that’s what I’ve been doing for over 20 years I’m in my 70s. I hope you get the information you are looking for but keep checking investigating. It will only give you answers and more questions