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FlakeHQ Interviews:

Ed Reiss

 Web Site Pioneer, National Psoriasis Foundation Advocate and Former Board Member,
Recipient of the Foundation's Beverly Foster Halprin Founders Award
and
Proprietor of The Psoriasis Online Toolbox ...

Interviewed by Ed Dewke  
in August, 2006

Dewke:  What do you say about a fellow who has been a physicist, a lawyer, a biotechnologist, a computer programmer, database engineer, inventor, entrepreneur (the list goes on)?  If you called him a renaissance man it might very well be the first time in your life you've used that expression with complete propriety.  You may or may not call him a "friend" and "mentor."  But I would. 

My friend, Ed Reiss, had been a stranger when we first exchanged emails in the mid 1990s.  I had written a book and wanted to build a web site through which to sell it and aggregate a community of like-minded people with psoriasis.  Ed Reiss was building a web site for the National Psoriasis Foundation; he was a font of knowledge about both psoriasis and the web (along with another Ed, Ed Anderson) and he was among the first psoriatics to understand my "darkly humorous" approach to the subject of flaking.

My mentor, Ed Reiss, taught me by example to use the web as a tool to expand my knowledge about —  and understanding of  the psoriatic condition; to present myself as an opinionated, hopefully informed layman and not an expert or health practitioner; and, perhaps most importantly, to assume a responsibility to the people whose allegiances I was seeking to earn.  By example, he showed me that giving was more rewarding than taking.  It was Ed Reiss who made me understand that if I never sold a book through FlakeHQ, but I was successful in building an online community that people with psoriasis enjoyed to visit, and from which they derived benefit, I would be much happier in the end.

I told Ed months ahead of time that I wanted to interview him for the 10th Anniversary update of FlakeHQ — September-October 2006.  Then, when it came time to start the interview process, Ed warned me that our timing couldn't be worse because of unavoidable commitments on his part.  I cajoled; he relented.  The Q&A you are about to read consumed lots of midnight oil on Ed Reiss's part.  On behalf of all of us, thanks for the extraordinary effort, Ed.

And you, dear readers:  Please set aside a few comfortable minutes to read this interview.  You will be rewarded.  -Ed Dewke

*****

Dewke:  Tell us about your psoriasis.  How long have you had it?  How severe?  What treatments have you tried?  How would you summarize the disease's impact on your life so far?

Reiss:  I've had psoriasis for over twenty years. It started as a couple of small patches on the elbows that slowly spread to the skin over my other joints, pressure points, scalp, lower legs, and other places where people with plaque psoriasis typically develop scales. If left untreated it would fall under the category of moderate psoriasis with heavy plaque and inflammation.

I've tried several treatments including sulfasalzine, all the standard topical medications, and diet. None of these approaches provided a long term solution. I eventually found that I respond well to the combination of home prescription ultraviolet light (UVB) and a topical tar distillate in an emollient (LCD in Aquaphor). As long as I'm compliant with the treatment regimen, remove any plaque before each light exposure (baths work best), and replace the bulbs when they wear down, then it’s a very effective treatment for me.

The impact of psoriasis on my life has been varied. Being in my early 30’s at the time of onset, and with initially mild disease, I didn't really feel that it had much of an impact
even when it became more severe. I eventually realized that it was beginning to affect some of my decisions in a manner that I wasn't always aware of at the time I made them. After several years I looked back and found myself shying away from public outdoor and social activities.  It was also physically limiting during flares, when it would be painful to move around and difficult to sleep comfortably. Luckily, home UVB treatments reduce the severity to a level that at times is barely detectable. I also get personal support from my friends at the San Francisco Bay Area / Peninsula Psoriasis Support Network.
 


Dewke:  Many of us became "aware" of Ed Reiss in the mid-1990s when the National Psoriasis Foundation publicized the fact that you were helping them get on line with a web site.  What's the story behind that?

Reiss:  I first contacted the National Psoriasis Foundation in late 1994. I had been on the Internet for over three years, and I would often search for psoriasis-related information online. When the World Wide Web became a viable medium for organizations like the Foundation I called them up to see if they had a web site. It turned out that they didn't, but they had been in contact with a company that had been awarded a government grant to build sites for non-profit organizations. I called the Foundation back several months later and a web site still wasn't in the works. I did some research and found that the company they were counting on to create their site wasn't very active. Since I had experience writing HTML and was also helping to organize a local Internet user group, I offered to help the Foundation find a new alternative. My intention was to locate another web development company that could build their site, so I was surprised when they asked me if I was interested in building it. In the end it was easy to accept the offer as an opportunity to try and accomplish something meaningful with respect to my disease. At the time, the Foundation didn't have programming expertise on their staff, so I located a web host, reserved the domain name "psoriasis.org," and designed and built the web site. Ed Anderson helped me learn what I needed to know to create some of the more involved programmatic features. I later helped the Foundation hook their offices up to the Internet through a dedicated line. Within a year I had also joined the Foundation’s board of trustees.

After three years of maintaining psoriasis.org I passed its maintenance and development back to the Foundation staff. In 1999 I was also asked to create the first version of the IFPA web site [International Federation of Psoriasis Associations], which I completed later that year.

 

Dewke:  Ten years ago, when you were an essential guide in my nearly blind attempts to launch FlakeHQ, there was your "Version One Psoriasis.Org" for the Foundation and alt.support.skin-diseases.psoriasis on Usenet, with Ed Anderson performing as Master-at-Arms, and his assorted pages including Hall of PShame.  There wasn't much else going on the web for psoriatics.  I can't remember if The Psoriasis Online Toolbox had an ancestor online then, or not.  It would be most interesting to hear your take on where we've been and where we're going as a definable web "user group."  First off, are we folks with psoriasis even definable as a web user group?

Reiss:  I don't think it’s plausible to characterize people with psoriasis on the Internet as a single definable user group. The online population has grown to such an extent that it exhibits the same level of diversity in personalities and world views as society at large. Now factor in the variability of psoriasis as a chronic condition. People can have different types of disease, different levels of severity, different degrees of arthritic complication, different responses to treatments, different levels of exposure to environmental triggers, uniquely tuned immune systems, and different genetic influences. It’s not just a question of individual backgrounds — the variability of the disease itself may cause different groups of people to have different needs that require different solutions. Sometimes people fail to understand this point, and feel that they are at cross purposes with others who don't share the same objectives. The unfortunate end result is that the online psoriasis community is not necessarily a united one. I'm glad that you asked this question, because I think it would be in our best interest if we were more unified than we are today.

Where we are and where we've been on the Internet is tied to the technologies that drive the online experience.  The increasing number of people with psoriasis on the Net corresponds to its growth as a publicly accessible medium. In the early 1990s the majority of Netizens came from universities, high tech companies and government institutions, and the online interactions that took place reflected that relatively narrow population. If you search the Google Groups archives you'll see that for a ten year period from 1981 to 1991, there were a total of thirty messages posted on all of the Usenet news groups combined that included the term “psoriasis.” From 1991 to 1995 the number of psoriasis-related messages doubled each year, but then increased ten-fold in 1996 when the population jumped, fueled by the growth of the Web and the influx of people from private networks. The software protocol behind the Web was created in 1991, but it was relatively expensive at the time to get the type of Internet connection needed to support a web browser with a graphical user interface. The Web started to take off in late 1994 when those connections (and software workarounds) became more accessible, and Netscape became widely available.

In 1995 when psoriasis.org was being constructed, there were already several medical Web sites that had been built by hospitals, universities, journals, and research institutions. However, there wasn't much psoriasis information on the Web specifically designed for people with psoriasis, nor were there sites that provided interactive support. That’s why the creation of psoriasis.org and later FlakeHQ were timely events. During the mid to late 90s, the psoriasis news group remained the primary online forum. Because the news group was unmoderated, there were always attempts to hawk products, and battles were fought over SPAM and often just clashing personalities. Although plenty of good discussions took place in the news group, by early 2000, a number of us believed that its un-moderated nature was not structured enough in the face of the growing diversity of the online population. As a result, I decided to create an experimental interactive web-based psoriasis community which I named psorheads.com. (The name was a take-off on the then-current atmosphere in the news group.) Ed Anderson eventually took over its management and administration. Very sadly, Psorheads’ web host suffered a fatal computer disk crash a year after its creation that destroyed all existing copies of its forum database. By that time, our members were active in other forums, and the decision was made not to restart from scratch. Psorheads never had a tremendous amount of traffic, but we hoped that it was at least a proof of concept for other psoriasis communities.

As to where we are today — the growth and commercialization of the Web has obviously changed the landscape since the mid 1990s. Back then, most people regarded the Web as a quaint techno-phenomenon. Today it’s ubiquitous.  While not many people would have thought of looking for psoriasis information online in the mid 90s, today it’s often the first place people will look. In the mid 90s there wasn't much psoriasis information on the Web. Today there’s more information than it’s possible to digest — and not all of it is reliable. Some of the medical and support information is very high quality, but there’s also a meaningful percentage that is inaccurate, speculative, biased, or just blatant marketing material.

On the positive side, the evolution of the Web has made information and peer support more accessible than it was ten years ago. The Psoriasis Foundation’s web site hosts databases that enable us to search for nearby physicians, local support groups, psoriasis-related products, and treatment tips from other people with psoriasis. Elsewhere on the Web are other resources. There are online scientific literature databases that catalogue articles published in peer-reviewed biomedical journals going back several decades. There are genomic and metabolic databases that allow us to view the genetic associations postulated for a particular disease, or the biochemical pathways associated with that disease. There are consumer resources for looking up the side effects of prescription medications, dietary supplements, and biomedical devices. There are an increasing number of patient-oriented medical information sites, prescription treatment information sites, and drug and disability assistance sites. There are also many web-based psoriasis communities that are diverse in their scope and focus.

As to where we are going, it’s not much of a stretch to predict that there are going to be more health related services offered on the Web.  Evolving technologies will likely continue to create new bells and whistles that will embellish the online experience, but my guess is that most of them won't be more relevant to the psoriasis community than they would be to any other group.  In my opinion the two most promising new directions on the horizon for people with psoriasis relate to advocacy and research.

The first direction, advocacy, is already being trail-blazed. The Web is an opportunity for any large group of people having mutual interests to leverage their numbers and be viewed as a meaningful political force. There are an estimated 6-7.5 million people with psoriasis in the U.S. alone, and 120 million world wide. The energy required to send a message to Congress using the automated forms in the advocacy section of psoriasis.org (or on a congressional representative’s Web site) is minuscule compared to the potential payoff. 

The other direction relates to psoriasis research. The Web has already proven useful for recruiting research study volunteers, and I think it also has the potential to be an effective tool for collecting research data. As an example, the Psoriasis Foundation has recently announced its Victor Henschel BioBank project as a major effort to collect a library of DNA samples to be complemented by ongoing patient data. Being able to associate continuing course of disease, and response to treatments to genetic makeup is the type of information that will allow researchers to understand the underlying causes of psoriasis to a greater extent than they do now. The Web holds promise as a potential future collection point for that ongoing data.

 

Dewke:  Can you tell us about any scientific research planned or underway that focuses on the potential relationship between diet and psoriasis?  To me, diet-based theories and treatment regimens constitute this huge “other planet” in a solar system called “how to treat psoriasis.”  Yet for a number of obvious (and probably a larger number of NOT so obvious) reasons, I’ve encountered far less literature regarding research about diet and psoriasis.  In the past six weeks I’ve encountered two “new” theories associating psoriasis with what we digest.  Intuitively and anecdotally, the link persists.  What do you know; what do you think?

Reiss:  There have been research studies performed on the potential relationships between diet and psoriasis, but they've been relatively few in number. Diet-based clinical treatment studies present challenges that other clinical research studies don't. Dietary regimens can be complex, with several foods (or groups of foods) and supplements being excluded or included. This makes it difficult to interpret results, which could be attributable to one, several, all, or none of the foods/supplements or their components included or avoided in the study — not to mention synergistic interactions. It also makes it difficult to monitor compliance by study subjects, especially over the long time frames that proponents of some diets claim are necessary to wait before visible results appear. Clinical studies on dietary supplements also have to face another hurdle — the verification of the supplement ingredients. Dietary supplements are currently not required to adhere to the same manufacturing standards and practices as prescription medications, and natural products can contain hundreds of ingredients — some of them known, and some of them unknown.

One of the more studied food supplement classes in respect to psoriasis is the family of n-3 polyunsaturated fatty acids (PUFAs) found in fish oil, walnuts, and linseeds. The n-3 PUFAs (alpha linoleic acid, EPA and DHA) have known anti-inflammatory properties and also interfere with the pro-inflammatory products of arachidonic acid, (which is found in egg yolk and red meat in high concentrations). Some people find oral omega-3 supplement regimens helpful for psoriasis, but double blind study results have been inconclusive. (I don’t know if any of these studies used enteric-coated capsules.) The one controlled study that showed uniformly successful results involved intravenous infusion of a specially prepared lipid extract of fish oil.

Another dietary element that’s been studied in respect to psoriasis is gluten, a constituent of wheat and other grains. Some people have an immune response to gliadin, a component of gluten, and produce anti-gliadin antibodies, (AGA), without having full-blown celiac disease. A study published in the British Journal of Dermatology in 1993 showed that 16% of the psoriatic study subjects displayed high levels of AGA. A subsequent Swedish study in 2000 found that 30 out of a group of 33 people with psoriasis who produced AGA experienced significant improvement when they adhered to a gluten-free diet. (I should probably mention that this study has been criticized for using an inadequately sized control group.) There’s a good article on gluten and psoriasis at the National Psoriasis Foundation web site: http://www.psoriasis.org/publications/advance/200406_gluteninterview.php

To briefly touch on other dietary research with which I’m familiar: in 1996 there was an Italian case study of over 300 subjects. The study found a positive correlation between improvement of psoriasis and the intake of foods supplying antioxidants, including carrots, fresh fruit and notably, tomatoes. (Tomatoes are noted as a food to be avoided in at least one popular psoriasis diet.) There have been several studies on the effect of tobacco and alcohol on psoriasis. The consensus view is that smoking and the excessive use of alcohol can exacerbate psoriasis and increase severity. There’s also a known correlation between smoking and pustular psoriasis in males. (There’s an in-depth article on smoking, alcohol and psoriasis at psoriasis.org.) There was an extended study published on the role of bile acids in psoriasis metabolism in Pathophysiology in 2003, the underlying theory being that bile acids help dispose of bacterial endotoxins produced by intestinal microflora.  In 2005, the National Psoriasis Foundation received a directed donation to fund a study on nutritional intervention in the treatment of psoriasis. As a result, the Foundation awarded a grant to Dr. Steve Feldman at Wake Forest University to study the effect on psoriasis of a lactobacillus-based supplement. Finally, an article published in the British Journal of Dermatology in 2005 titled “Diet and psoriasis: experimental data and clinical evidence” reviews several studies of the type that you’re asking about.

Since I mentioned a number of research and case studies in response to this question, I think it's important to qualify that the scientific implications of a study depends on a number of factors, including the number of study subjects, the presence of a control group, and "blinding."  If the number of study subjects is inadequate, then there is an increased likelihood that the study results will be random in nature and therefore meaningless. The advantage of comparing treatment results to the results of a control group receiving a placebo is another issue. It is well known that a placebo alone can influence the course of a disease being studied. This is especially true for psoriasis, because the immune system can be influenced by the central nervous system, and thus our state of mind. Blinding where the study participants and/or the researchers conducting the study don’t know if a particular participant is receiving the treatment or placebo is another technique used to reduce the chance that the placebo effect or subjective evaluation on the part of researchers will influence study results. The statistical significance of research study results is a much more complex topic than what is covered in this paragraph. The important point to remember is that an uncontrolled study with relatively few subjects can produce an outcome that may be interesting as anecdotal evidence, but not useful as proof that the treatment being studied is effective.

Your question is specifically directed to dietary theories. I think it’s important to draw a distinction between a dietary regimen (a list of excluded and included foods) and a dietary theory that associates a specific regimen with psoriasis. A healthy regimen that provides a balanced and nutritious diet has value whether it helps resolve psoriasis or not. A dietary theory that associates a regimen with psoriasis should be held to the same standard of scientific scrutiny that other theories regarding psoriasis are subjected to. It should be based on presumptions supported by scientifically established facts, it should be logical and consistent with what has already been scientifically observed about psoriasis, and it should be scientifically verifiable.
 
The whole issue of diet is an especially muddy one, because in the minds of many it relates not only to foods, but also to a class of nutritional items called “dietary supplements.” This class includes vitamins, and herbal derivatives that may be just as concentrated and biologically active as prescription medications. Since the passage of the Dietary Supplement Health and Education Act (DSHEA) in the mid 1990s, dietary supplements are essentially unregulated before they are brought to market. 
 
If someone is going to depend upon a treatment for psoriasis, especially severe psoriasis, then it is crucial to have a realistic idea of how likely it is that the treatment will actually help reduce symptoms. One problem with anecdotal accounts of non-established treatments for psoriasis is that in the majority of cases, there is not a reliable measure for estimating the chance of success. An additional problem with dietary supplements is that there is no requirement that the manufacturer list potential side effects or contraindications with other supplements or prescription medications. Because there are no mandated manufacturing standards, contamination and undeclared ingredients are also issues, especially for supplements imported from other countries. 

Treatment decisions have to come down to individual choice, and ideally the choice should be an informed one based on some type of risk benefit analysis. If the treatment is a healthy, nutritious diet, then it’s a win-win situation. The addition of dietary supplements makes that type of analysis more difficult. If a person has severe pustular or erythrodermic psoriasis that requires immediate attention by a physician, or any form of psoriatic arthritis that can cause irreversible joint damage if left untreated, then forgoing conventional treatments for unproven ones also involves a much greater level of risk.
 
Since we know that psoriasis can be set off or exacerbated by environmental triggers, it’s plausible that foods may act as a trigger for some people with the condition. Other foods and food derivatives may have anti-inflammatory properties (fish oil), immune-mediating properties (turmeric), or light sensitizing properties (celery) which can affect psoriasis.  Diet cannot be the only factor that influences psoriasis because there’s no indication that the dietary habits of people with psoriasis are different from those of the general population — and only approximately 2% of that population suffers from the condition. Any theory that postulates an association between a common environmental factor and a disease has to explain why the disease is limited to the affected population. In the case of psoriasis, it would also have to reconcile itself with the scientifically established, immune-mediated nature of the disease, and the multiple genetic associations that have already been detected by researchers.

 

Dewke:  Flakers have never had so many product choices for palliating their P, and some of the new ones (e.g., biologics) are proving to be unprecedentedly effective.  If our arsenal of ways to suppress the symptoms of P continues to grow and improve, is the energy (i.e., initiative and resources) to find a cure likely to dissipate?  If not, what will motivate continuing the search for a cure?

Reiss:  That’s a tough and speculative question, and there are plenty of people who can give you a better response than I can.

There are preliminary questions to consider:  How expensive and accessible will the new treatments be? To what degree will they be covered by health insurance? How convenient will they be to administer?  What are the side effects, contraindications, and dietary or lifestyle restrictions? Will they successfully treat all types of psoriasis and all levels of severity, or only a few? How long will they remain effective? What will the future federal research funding climate be like?

I’d also need to know the meaning of the word “cure.” Is a single pill or a single injection that needs to be given once a year a cure?  Some people may consider that a cure, but others may not. A cure in the classical sense implies a single treatment that would permanently eliminate the susceptibility to develop psoriasis for everybody with the disease. I would never say “never,” but I don’t believe a single cure of that type is likely to be found because of the genetic diversity of psoriasis.

There are currently around twenty genetic loci that are suspected to harbor genes or other types of functional genetic sequences that play a role in psoriasis. Most researchers believe that more will be discovered. The implication is that different forms of psoriasis, and the potential to develop different levels of severity of psoriasis, may involve interactions between different sets of genes. Genes that predispose to psoriatic arthritis would also have to be factored into the equation.

To produce a true cure that eliminates psoriasis susceptibility completely would require that selective gene therapy be applied to each individual psoriasis genotype (genetic profile). As a result, there would be several cures, as opposed to a single cure. However, gene therapy is a very new approach, has not often been successful, and would take an indeterminately long period of time to develop. In any case, this scenario lies at an unpredictable future date.

For the near future, I do not think that increasingly effective treatments will derail future research into the nature of psoriasis, the search for a cure, or the search for better treatments — for a number of reasons.

The first reason derives from the fact that psoriasis is an immune mediated disorder that shares characteristics with several other immune disorders including Crohn’s disease, ulcerative colitis, type 1 diabetes, multiple sclerosis, scleroderma, rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis. All of these diseases taken together constitute a very large target for drug companies. If a specific immunomodulatory treatment is successful for any one of these diseases, it increases the likelihood that it may be a potential treatment for the others. And out of all of these diseases, psoriasis provides the easiest method of measuring response to treatment, since it visibly manifests on the skin. It also affects a relatively large percentage of the population. Consequently, pharmaceutical companies often consider developing a psoriasis version of an immunological treatment before they attempt to apply it to other immune disorders. Even further interest has been spurred by the success of the first round of biologic medications. As a result, there is a large amount of ongoing pharmaceutical research seeking to develop novel psoriasis treatments, which in turn contributes to knowledge about the underlying mechanism of the disease process.

Another significant factor is the current trend in basic psoriasis research to seek out associations between psoriasis genotypes and phenotypes. (This just means that there is an attempt to associate groups of people who have specific sets of psoriasis-implicated genes, with corresponding specific sets of symptoms and responses to treatment.)  This strategy is good news because it may lead to the identification of new genes that have not been previously implicated in psoriasis. It could also eventually lead to more targeted treatments that are keyed to each individual’s specific genetic profile.

It’s almost a mantra among people with psoriasis that “what works for one person will not necessarily work for somebody else,” and one contributing factor is the genetic diversity of the disease. If a future treatment is designed for a specific genotype, and a person belongs to that genotype, (which even today is easily determined), the odds are much greater that there will be a positive response to treatment. By further reducing the elements of trial and error, genotype specific treatments should generate more consistently effective results. Significantly, genotype/phenotype research is one of the early, necessary steps in the search for a real cure. Not coincidentally, it’s also one of the major incentives for the development of the National Psoriasis Victor Henschel Biobank.

Finally, I don’t think that anyone who has children with psoriasis or psoriasis in their extended family would stand by and let the search for a cure come to a halt. We all know that what we have to contend with today, our children and grandchildren will have to contend with in the future. Better treatments are a wonderful and necessary first step, but we want to remove the future burden of having to continually treat this disease. People with psoriasis can be the masters of their own fate and the fate of their families by supporting a search for the cure, and I hope that this opportunity is not going to be ignored.

 

Dewke:  The copyright notice on the bottom of pages at your Psoriasis (and Psoriatic Arthritis) Online Toolbox says “2002-2006,” which means this resource has been available to folks like me for at least four years now.  The best word I’ve come up with for describing the utility of the Toolbox is “indefatigable,” because when I’m looking for answers to a FlakeHQ correspondent’s question it’s impossible to wear out the Toolbox.  It appears any question about P that HAS an answer can be plumbed using the Toolbox.  Please tell us the story behind its creation.  Why did you build it (or perhaps “assemble it” is the better expression)?  Why (and under what circumstances) would you suggest someone try using the Toolbox?  What tips and cautionary notes might you have for newbies to the Toolbox?

Reiss:  I originally built the Toolbox as a resource that would allow me to look up information before and during National Psoriasis Foundation conference calls. I thought it would be useful to have a tool that would allow me to look up psoriasis-related information on the internet at a moment's notice. I was already using Ed Anderson’s search tools on his Skin Page, but I knew of resources he didn’t list that I wanted access to. As a result, I decided to build a customized search page for myself.

The first version of the Toolbox contained a series of links and search forms that I slapped together into one web page for the single purpose of quickly searching for any kind of information I could conceivably want online that was psoriasis-related. I later added two other pages containing links to preformatted Pubmed searches and links to FDA regulatory documents relevant to psoriasis. Initially, the Toolbox was optimized for speed, and not very user-friendly. In fact, I deliberately kept it streamlined without instructions or user guides. Despite the lack of user-friendliness, I decided to keep it publicly available for a few friends and any advanced web surfers who might find it helpful. The Toolbox remained in that state for three years until I rotated off the Foundation’s board in June of 2005.  At that point I decided I should either remove the Toolbox permanently or make it suitable for use by the general public. In the end I decided to keep it online and give it a major face lift and redesign. It took me a few months to update the resources, separate and annotate the links and search forms, and write instructions for inexperienced users. I published the current version in October of 2005.

I tried to make the Toolbox suitable for self-education at multiple levels.  In particular, the links page was designed to help an Internet beginner understand the categories of information that are available online, and then present resources that fall under each category.  Although I try to list as many resources as I can, I know I can’t cover them all, so I point to other patient-driven communities and “meta-pages” that provide links, including Ed Anderson’s Skin Page,  Kim Malo’s Psoriasis Newsgroup Faq, and FlakeHQ, among others. I also point to the National Psoriasis Foundation web site as the best place — by far — to start looking for detailed, patient-oriented psoriasis information, and to actively participate in psoriasis advocacy and outreach.

The Toolbox’s “Search Tools” page was modeled after Ed Anderson’s “Skin Page” and requires the ability to use a search engine form. That might not seem like a big requirement, but there are many people who are still uncomfortable with online technology. The “Literature Searches” page contains preformatted Pubmed searches that are relevant to psoriasis. It also requires a familiarity with online search engine outputs, and with the biomedical terms being searched upon. The last page in the Toolbox contains links to a wide range of regulatory documents on the FDA web site that discuss medications used to treat psoriasis. It’s currently geared to a more professional audience, but also includes links to resources that offer patient information sheets.

On a cautionary note, I think that the ability to accurately assess the reliability of online information is even more important than the ability to search for it. There’s so much information available on the Web from so many different sources, that being able to exercise a critical eye to discern the wheat from the chaff is an essential skill. I realize that people have different philosophies about health care, and don’t always trust the same sources of information, but there are questions that anybody can ask of any online resource to assess its credibility: Is the information offered on a web site endorsing the sale of one or more products?  Does the web site offer full and clear disclosure of its affiliations with other companies or organizations?  Does the web site try to be neutral, fair and objective in its offerings?  Is the content on the web site grounded in results generated by peer-reviewed scientific research?  For people seeking more detailed information on this subject, there is a category devoted to consumer resources on the Toolbox links page. One of the resources listed in that category is a handout for an Internet workshop titled: E-Help, Using the Internet to Your Advantage ("doc" file — requires Microsoft Word) that was offered at the National Psoriasis Foundation 2004 National Conference. I link to a version of that document that’s hosted on psoriasis.org in MS Word format.

 

Dewke: Obviously, Ed Reiss advocates patient initiative in the management of psoriasis.  The “take charge” theme has been advocated by the National Psoriasis Foundation and echoes through the professional and volunteer work of many visible people in the flaker community, including everyone who has been interviewed at FlakeHQ (and everyone on my wish-list for future interviews).  Whether or not you planned it — and I rather doubt you did — you are a leader in this community and a model flaker for the “take charge” theme.  Frankly, I’d not want to be your dermatologist (unless I was extraordinarily humble and a firm believer in ad hoc continuing professional education).  Yet, when I look back over the past 10 years, I find that your advocacy, your leadership, has, for the most part, been quiet and self-effacing.  It’s like Ed Reiss is rarely visible on the radar, but when important things happen, he’s either involved or standing by to explain. If you will indulge me (indulge us) for a final few moments of reflection, I want to put you in a position for which I feel you were born:

Pretend, for as long as it takes you to react to this, that I have just been diagnosed with psoriasis.  I am moderately affected with visible plaque lesions.  Ed:  What do I have to look forward to?  How should I handle this?  What should I do?

Reiss: That’s really flattering, but there are many people who are repeating this message, and it’s been around for a while. There are also many unheralded volunteers and health care professionals, online and off, who devote their own personal time and energy to help people with psoriasis. I think that the message you’re talking about is taking hold today more than in the past, because it’s badly needed in an age of complex modern medicine and managed care. The dissemination of the message is also being aided in a big way by the ease of delivery of information over the Internet.

The first thing I would tell someone who has been newly diagnosed with psoriasis is that it’s not the end of the world. Most of the new developments in understanding and treating this disease have taken place in the last 20 years, and are just beginning to pay dividends. If I had to choose to be a person with psoriasis at some time in the last century, I would choose today. There are more effective treatment options for people with severe and moderate psoriasis than ever before, and there are more on the way.

The first step I would recommend taking is to contact the National Psoriasis Foundation, visit their web site, and extract as much information from www.psoriasis.org as you possibly can. The Foundation has resources for people who are newly diagnosed, and pages of information about types of psoriasis, treatments, coping, relationships, getting support, lifestyles, obtaining insurance coverage, and finding a good physician, among others. You might initially focus on understanding the disease, then the different treatment options. Once acquainted with psoriasis.org, I would hope you would consider joining the Foundation to help further its mission. If we don’t collectively advocate on behalf of ourselves, nobody else will.

The next important step is to determine treatment options that are right for you. If the diagnosis of psoriasis was provided by a general practitioner, these options may be limited, and it’s time to consider searching for a dermatologist. During the search, it’s important to remember that dermatology is a broad medical specialty, and not all dermatologists specialize in the treatment of psoriasis. Cosmetic dermatology is a growing trend within the profession, and many dermatologists who specialize in this area will not even take on psoriasis patients. One place to start searching is the physician database at psoriasis.org. A listing in the database is not the same as an endorsement, but each listing includes the physician’s years of experience treating psoriasis, the number of psoriasis patients treated, and the range of treatments that are offered. Another option, if you live near a university-affiliated teaching hospital, would be to check that hospital’s dermatology department for psoriasis specialists or a psoriasis treatment center. Physicians who direct or work at such facilities usually have access to a broader range of treatments, and to ongoing clinical research studies.

When meeting with a doctor for the first time it’s worthwhile to be an educated patient. Only you know the types of risks you’re willing to take and the benefits you are seeking — and having familiarity with potential treatments gives you the ability to communicate clearly and intelligently. Don’t be afraid to ask questions: “Why this particular treatment?” “What are the potential risks, side effects and contraindications?” “What is the proper way to use this medication?” “How long will it take before I begin to see results?” The respect that a physician’s expertise demands shouldn’t get in the way of having a candid conversation about needs and expectations. The best type of doctor-patient relationship is a partnership, with respect accorded on both sides.

If you are denied insurance coverage for a needed treatment, or unable to afford medical insurance at all, (an all too common occurrence today), or co-payments for recommended treatments — there are several options that you can pursue. The National Psoriasis Foundation provides an Advocacy section on psoriasis.org that teaches self-advocacy with insurance companies and provides strategies, sample letters, and supporting material. There are also patient assistance programs run by non-profits — sometimes supported by pharmaceutical companies — that provide expensive medications at little or no cost to people who meet certain income qualifications. Phase III clinical research studies may also provide access to FDA approved medications or treatments that are otherwise unaffordable.

If you are considering participating in a phase II study, in which the treatment being studied has not been pre-approved, then it’s important to understand the risks and benefits inherent in that treatment. There is detailed information about the questions you should ask and your rights as a study subject in the Clinical Research Trials section of psoriasis.org.

If you are uncomfortable with the choices offered by western medicine, and choose to follow an alternative or complementary treatment regimen, then vigilant online self education is the key.  A good place to start searching for information about alternative psoriasis treatments is the Alternative Approaches section of psoriasis.org, which provides information about different alternative and complementary approaches to treating psoriasis, and links to other resources.

When investigating claims made by people selling, marketing or using alternative treatments, there is no substitute for personal research. You can’t take anything for granted. If research studies are cited, search for them using the Pubmed database, which can be accessed at the National Center for Biotechnology Institute web site. If a patent is claimed, look it up using the search engine at the US Patent and Trademark office web site. Search the FDA web site for references to the manufacturer or provider of a psoriasis related product. Search the domain name database at internic.net to find information about the registered owner of a domain associated with a psoriasis-related web site. Both the Psoriasis Online Toolbox site and Ed Anderson’s Skin Diseases page at pinch.com provide consolidated links and search forms for most of these resources, allowing you to access them all from one web page. The Toolbox also contains links to consumer resources and online tracts describing how to find reliable health information on the web.

There is no perfect formula for choosing the right approach — that path differs for everybody.  But you can educate yourself until the facts about psoriasis and the treatment options that are available become familiar territory. After that it becomes a matter of personal choice. 

 

Dewke:  Thanks for granting us this interview, Ed — and for being at least partly responsible for the 10 years it's taken FlakeHQ.com to get to this point.  Your advice was essential to me a decade ago, and you have written many things in your answers here that will prove valuable to all of us in the months and years ahead. 


Visit The Psoriasis and Psoriatic Arthritis Online Toolbox
http://pso.webwillow.com

photos courtesy Ed Anderson and the
National Psoriasis Foundation

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