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FlakeHQ Interviews:

Jody Kim-Eng

 Co-Founder
San Francisco Bay Area/Peninsula Psoriasis Support Network

Interviewed by Ed Dewke  
in April, 2006

Ed:  When I joined the National Psoriasis Foundation in the early 1990s, they were actively promoting a network of local support groups and, for awhile, I contemplated starting one in the Bluegrass of Kentucky.  I had some exchanges with the Foundation about the prospects but eventually decided I wasn’t the person for the job.   As far as I know, the Bluegrass of Kentucky still doesn’t have a P-support group and I remain envious of all the FlakeHQ correspondents who have founded their own or are part of local support groups.

Fred Finkelstein’s film My Skin’s On Fire (currently on the road) featured interviews with the some of the members of the San Francisco Bay Area/Peninsula Psoriasis Support Network — a group known to me because two interviewees so far have attended their meetings:  Ed Anderson and Fred.  Also, the group’s leader, Jody Kim-Eng, was interviewed at length for Fred’s film (as were co-founders and assistant leaders Diana Cordio and Brendalynn Kong).  Fred’s film has made Jody, Diana and Brendalynn three of the most visible group leaders alive — at least for the moment.  That isn’t to say they work harder or differently than the dozens of other, in many cases more experienced, P-support group leaders around the country; but it means their story is partly out there and I wanted to conduct this interview to see if we could get the rest of the story.

Jody Kim-Eng has had psoriasis for 9 years and the first thing P did to her life was compel her to quit her job as a law office manager and become a work-at-home transcriptionist, thereby avoiding the public.  She wasn’t diagnosed right away; in fact for several years she thought her problem was eczema.  “I read about psoriasis and did not want my problem to be that,” she says.  A few years ago a doctor told her the lesions he saw on her hands were probably psoriasis and recommended she see a dermatologist.  At the time, she was beginning to feel pain in some joints, too.  She did see a dermatologist and was diagnosed with both psoriasis and psoriatic arthritis.  Jody says she very quickly found and joined the National Psoriasis Foundation.  Then, a year ago, her P-arthritis became completely disabling and she quit her part-time job.  She says what little energy she has goes into her volunteer efforts with the Foundation and her role as P-support group leader.  “Today, with the loving support of my husband Gene, I’m able to take my focus off this disease and onto helping others cope with living with psoriasis and psoriatic arthritis.  Instead of psoriasis controlling my life, I’m empowered to take control of my disease by helping to increase awareness and advocating for better access to treatment.”

I interviewed Jody in April and the story has ended up being even better than I expected.  -Ed

*****

Ed:  How does being part of a support group help you live with psoriasis or psoriatic arthritis? 

Jody:  One of the worst aspects of having psoriasis is the feeling that we're alone, that we have to hide our disease from others to avoid repulsion and ridicule.  Psoriatic arthritis can devastate us emotionally too, in that people often don't understand our physical limitations and are often dismissive.  That can also make us feel isolated.  No matter how supportive our friends and family members try to be, they really don't understand.

When I attend a support group meeting, I am talking with others who know exactly how I feel.  I feel total acceptance.  It creates a sense of community that I can't get elsewhere.  I can talk about all the ways psoriasis and psoriatic arthritis affect my life, and everyone gets it.  When I talk about the pain, bleeding, itching, flaking, etc. of dealing with psoriasis, I get nods of understanding.  When I talk about how some mornings it takes me at least a half hour to get my body moving well enough to get out of bed, they know what I'm talking about because at least someone else there has the same experiences.

You might think it would add to feelings of depression to focus on psoriasis/psoriatic arthritis for two hours every month.  Not so.  Yes, it's a place to vent about the frustrations of dealing with this disease, but it's also a place where we share our hints and tricks for dealing with it.  We share our experiences with various treatments and the degrees of success we have with them.  We talk about ways to make our visits with our doctors more productive by arming ourselves with information and taking a "partnership" approach with them.  We share our stories, our successes and our failures, often with a great deal of laughter, occasionally with tears.  Friendships are formed and strengthened.

When I attend a support group meeting feeling down and depressed, I always leave feeling better.  When I'm feeling good, I leave feeling great.  Some months I need the emotional support and take that away from a meeting.  Some months I'm doing great emotionally and give back to the group by helping others who may be in a negative space that night.

We can get a lot of great information about psoriasis and psoriatic arthritis from our doctors.  There is a wealth of information to be found on the Internet on Web sites such as the National Psoriasis Foundation's site (http://www.psoriasis.org) and FlakeHQ.  I can't stress enough how important those resources are.  But talking face-to-face with others who share the challenges of dealing with these diseases offers a unique sense of belonging and community that can't be duplicated in any other way.

 

Ed:  Please share the story of the creation of your support group. 

Jody:  Shortly after I was diagnosed with psoriasis, I found the National Psoriasis Foundation Web site.  I was impressed with the work they were doing and immediately joined.  I started reading the message boards, where there is a very strong community of people from all over the world sharing information and support.  As much as I enjoyed that community, I felt something was missing.  I wanted to meet people with psoriasis.  I tried to find information on any local support groups and was disappointed to find there weren't any in my area.  I started toying with the idea of starting a group, but was a little daunted as I'd never done anything remotely like this and wasn't sure how much I was willing to commit to such an undertaking.

As luck would have it, just as I was contemplating the idea, in May of 2004 I saw a post on the Psoriasis Foundation message boards from someone asking if anyone knew of any support groups in the San Francisco Bay Area.  I replied to her that I hadn't found any, and asked if she'd be interested in starting one with me.  Neither of us were comfortable with starting a group alone, but we thought maybe if we worked together it might be doable.

That's how I met Diana Cordio, one of the two women who help me lead our support group.  She and I met for coffee. This was the first time either of us met anyone else with psoriasis, and we had an immediate emotional connection.  I had contacted the National Psoriasis Foundation about starting a support group, and they had sent me a pamphlet with tips on running a group.

At that time in 2004, the National Psoriasis Foundation was taking a hands-off approach to local support groups.  While they encouraged the formation of groups, the groups were not affiliated with the Foundation.  The Foundation provided a listing of support groups in its magazine and provided the pamphlet I mentioned, but that was about it.  Support groups were on their own, neither sharing non-profit status with the Foundation nor receiving any funding or training for such.

Again, luck was on my side.  What Diana and I didn't know at the time was the Foundation had recently decided to bring local support groups under its umbrella.  We found out that at the 2004 National Conference the Foundation was going to provide training and affiliation to support groups.  We decided to put off having our first meeting until after we attended the Conference and got our training.

Two months before the conference Brendalynn Kong joined the message boards, also asking if there were any local support groups in the Bay Area.  Diana started talking with Brenda, and the three of us met and decided to work together on this project.  Again, Brenda hadn't met anyone else with psoriasis or psoriatic arthritis before meeting us.

 

Diana Cordio ... Jody Kim-Eng ... Brendalynn Kong
Co-Founders, San Francisco Bay Area/Peninsula Psoriasis Support Network

The three of us attended the 2004 Conference (which, again by luck, was in San Diego, making it relatively easy for us to attend), and we attended the support group leader training workshop.  The Foundation was launching a whole new program, providing a wealth of materials, training and affiliation to local support groups around the country.  We would not only share nonprofit status with the Foundation, but as affiliated groups we would enjoy numerous other benefits and resources, including being able to network with other leaders.

Attending the Conference reinforced our desire for community with other psoriasis patients.  Spending three days with 250 people who knew what it was like to live with psoriasis and/or arthritis was one of the most emotionally profound experiences I've ever had.  It was fun, educational and empowering.  We knew we had to bring that energy to a local level.

We returned from the Conference with a renewed sense of purpose.  Diana worked hard on finding us a suitable meeting location, I looked for ways to get the word out about our group, Brenda put together some ideas for running our first meeting, and on October 19, 2004, we had our inaugural meeting.

 

Ed:  What advice — pitfalls, opportunities — would you share with others contemplating starting a group?

Jody:  My first words of advice would be to contact the National Psoriasis Foundation about starting a group.  Starting and running a support group can be intimidating, but doing so under the umbrella of the Foundation takes a great deal of that intimidation out of the picture.  The Foundation provides so many ways to facilitate this endeavor, plus you get the support and advice of others who have traveled this path.

A support group can be as big or small as you want to make it.  You can have a group that provides emotional support through meetings and social activities.  If you decide you want to bring the group to higher levels, the Foundation provides three tiers of group participation.  The first, as I mentioned, is an emotional group.  The next level is a group that gets involved in medical outreach, where group members visit with local dermatologists and rheumatologists, bringing them information about the Foundation and your group.  These alliances with the medical community are invaluable, as doctors’ offices are often happy to give their patients information about your support group, sometimes posting flyers in their offices.  This helps the Foundation also, as it encourages these offices to become professional members of the Foundation.

The third level of support groups is advocacy.  Your members may want to involve themselves in advocacy on a local and/or national level, attending the annual Capitol Hill Day in Washington, D.C., where Foundation members visit with members of Congress, working on funding for research and awareness.  On a local level, advocacy includes working with state governments on treatment access issues, insurance issues, awareness, etc.

All three levels provide a valuable resource to psoriasis patients.  When our group was first formed, we started as an emotional support group.  We weren't sure how much time and effort we were willing to put forth, so we wanted to start small.  Since then we've been involved in all three levels, and opportunities for greater involvement continue to present themselves.

The thought of running a support group can seem overwhelming.  My advice is to start small as an emotional support group and see how it feels to you before expanding into other areas.  You may decide that that's the type of group you want and keep it at that level, which is great.  You're providing a valuable resource to people in your area just by giving them a place they can come to and talk with others in a safe, confidential and supportive environment.

Running a support group should never feel like a burden.  It should be fun for its leaders as much as its members.  If at any time you feel like you're doing too much, step back a little.  Let others handle some of the responsibilities.  Don't try to do it all alone, and never feel obligated to do more than you're comfortable doing.  The National Psoriasis Foundation will always have opportunities for you and your group members to volunteer, but that's the key word — "volunteer."  If you don't feel comfortable taking it on, it's okay to say no.

We started our group with three people.  I signed up as leader, and Diana and Brenda took on the roles of assistant leader.  You can also find someone to be a co-leader, sharing the responsibility.  There are as many different types of support groups as there are support groups.  But sharing responsibilities and delegating is the best way to ensure you don't burn yourself out trying to run a group.

Besides training, a support group affiliated with the National Psoriasis Foundation also receives business cards, a Web site dedicated to that group, flyers, name badges for the leaders, and informational brochures about psoriasis, psoriatic arthritis, treatment options and information about dealing with insurance.  All of this is free to the groups.  Once a group is established, there is also a small amount of funding available to cover the administrative expenses associated with running a group, such as refreshments, mailing costs, etc.

Support groups can also receive donations from pharmaceutical companies or run fundraising events in their communities.  Running a support group shouldn't be a financial burden on its leaders, and we don't charge anyone to become a member or attend meetings.

 

Ed:  Your description of the three tiers of involvement for groups being supported by the National Psoriasis Foundation is interesting (emotional, medical outreach, advocacy).  Why and how did your group make the decision to "step up" to tier two and, eventually, tier three?

Jody:  Once we had the first few meetings under our belts and we became more comfortable with the day-to-day operation of the group, we found that between the three of us we had more time and energy than was required for meeting once a month.  When the National Psoriasis Foundation told us about the medical outreach program, we saw it as a great opportunity to meet doctors in the area and get the word out about our group.  It's really a great way to increase membership in the group, and it's a another way to identify doctors who might be interested in coming to speak at a meeting.  So it was an easy and logical step for our group to take.

I guess I'm responsible for bringing our group to the advocacy level.  I attended the 2005 Capitol Hill Day event in Washington, D.C. last April (2005), and encouraged others in my group to go with me.  This was around the same time that our group was working closely with Fred Finkelstein, the producer of My Skin's on Fire.  He had joined our group and was attending Capitol Hill Day for the film.  So we had four people from our support group in Washington, D.C. last year.  This year we again had four people from our group at the 2006 Capitol Hill Day.  I'm pretty proud of that.  It's a big time and money commitment to travel across the country for this event.

Once our group got involved at the national level, it was easy to bring that to a local level.  Every year the Foundation has Local Lobby Week, when Congress is back in their home states.  We visit their local offices to talk about the same issues we were in D.C. to talk about.  And periodically the Foundation informs us of letter writing opportunities, which we then pass on to the group.

Not every member of our group gets involved at every level.  Some members just come to the meetings.  Some are interested in doing some medical outreach.  Some want to work on advocacy with us.  It's completely voluntary.  No one is required to volunteer for any of these activities.  We just make them available for those who are interested.

 

Ed:  How do your meetings work?  Do you plan activities, have an agenda, bring in guests?

Jody:  Our group meets once a month, on the second Tuesday of the month, from 7 to 9 p.m.  Choosing a specific day of the month to hold meetings creates a sense of consistency.  Our members know without checking with us when the next meeting will be held.  Some groups meet in a restaurant or coffee shop.  Some meet at hospitals or libraries.  Diana found a local community foundation that lets other nonprofits borrow their conference rooms for meetings for free.

Some meetings are unstructured.  I start the meeting by sharing Psoriasis Foundation news, upcoming events, research articles, etc.  If there are new attendees we introduce ourselves and share stories.  New attendees are usually brimming with questions so those meetings tend to run themselves.  Everyone gets a chance to talk, ask and answer questions, gather materials, etc.  We offer light refreshments at our meeting and break after the first hour so people can get a cookie or a pastry and a cup of coffee and mingle with others.

We also have meetings where a guest speaker will come in.  For instance, for our meeting on May 9th (2006), a rheumatologist will speak and answer questions about psoriatic arthritis.  We also welcome dermatologists, nutritionists, massage therapists, psychologists and alternative medicine practitioners to come speak at our meetings.  Many of these professionals are happy to speak at a support group meeting for free.

We also schedule social events.  I host an open house party at my home twice a year, where sometimes friends I've made around the country at conferences travel to attend and meet our local support group members.  In February we hosted a "Bowl & Sing," an evening of bowling and karaoke.

The National Psoriasis Foundation also provides meeting topic kits, which include all the materials needed to run a meeting around a certain topic.  There are around 15 different topic kits available at this time.

 

Ed:  Have you experienced any pressure from outsiders to be heard at group meeting?  For example, has anyone selling "remedies" asked to be allowed in?  If so, how did you handle it? 

Jody:  We do get solicitations from individuals and companies who want to present to the group.  No one selling a product is allowed to present to our group.  That includes pharmaceutical companies.  Our group is more than happy to attend a community event hosted by these companies to represent the National Psoriasis Foundation and to spread the word about our group.  and sometimes they'll sponsor a meeting by helping to identify a dermatologist or rheumatologist to speak at a meeting.  If the doctor requires an honorarium, the sponsoring company will cover that for us.  But the company itself isn't present at the meeting, and our group doesn't endorse any one treatment.

I was once contacted by a woman who said she was a nutritionist, and that she had devised a diet that "cured" psoriasis.  She was looking for people to try her diet (at a pretty steep cost) and wanted to talk to our group to find new clients.  I asked her what her dietary theory was based on, and she said, "well since it's well known that psoriasis is a metabolic condition..."  I replied that as far as I knew, psoriasis is considered to be an immune-mediated disease.  This was news to her.  I directed her to the National Psoriasis Foundation Web site and asked her to do some research on the latest findings, and to get back to me if she found that this new information changed her diet "cure."  I never heard back from her.

This not to say we discount alternative methods for treating psoriasis.  We have members who pursue that avenue, and we welcome alternative medicine practitioners to come speak at our meetings, as long as they're not making claims to have "the cure."  If someone wants to share a product with our group that claims to help manage psoriasis and/or psoriatic arthritis, we will be happy to pass on their information, free samples, etc.  We only ask that any product be accompanied by a full list of ingredients.  Some of our members are on medications that might be contraindicated with some ingredients.  Others may be allergic.  While we are willing to pass these products on to our members, we also caution our members to research each ingredient before applying or swallowing anything.  If they are on prescription medication, we also emphasize how important it is that they check with their doctor before trying it.

 

Ed:  Can managing a support group really cost nothing?  If money becomes an issue, how might you approach it?

Jody:  I don't know if it can cost nothing, but it doesn't have to cost much.  You can share the cost of refreshments with other group members, or find a pharmaceutical company to sponsor a meeting by providing refreshments.  Keeping an email list means you can keep members updated on meetings and events without having to buy supplies and stamps.  Or you can make a phone tree, where you split the contact list between a few people who are responsible for calling the members on their list.  The Psoriasis Foundation provides our business cards, name badges and flyers.  They also provide all the materials we need to attend health fairs and community education events.

There are places you can meet for free, such as hospitals and libraries.  Some restaurants allow people to meet, possibly with a commitment of a minimum of food/beverage purchase.

You can receive financial donations to your group from individuals or companies.  Anyone who donates to our group gives the money directly to the National Psoriasis Foundation in our group's name.  The Foundation keeps 20% of the donation for administrative costs and the rest is held for use by our group.  At this time our group is pretty well funded, but if in the future we needed to, we could host a fundraising activity.

Even spreading the word about your group doesn't have to cost money.  Doctors, pharmacies and hospitals are often willing to post flyers for their patients.  Community bulletin boards outside of grocery stores and at colleges are usually open for anyone to post a flyer.  Local newspapers often have a community events section where they accept meeting announcements free of charge.  You might even be able to persuade local media to do a story about your group.

The National Psoriasis Foundation also hosts a support group leader email list, where newer leaders can pick the brains of the more experienced leaders, who are more than willing to share their tips and insights on running a group.

 

Ed:  Jody, we appreciate your taking the time to round-out the story of the “San Francisco Bay Area/Peninsula Psoriasis Support Network.”  As we were exchanging emails, it occurred to me that you had resolved some of the issues that kept me from starting a group a decade ago.  Now I’m going to have to revisit the issue!  There’s an unflattering saying about taking a misfortune and turning it into a good thing.  You are certainly showing all of us one way this can be accomplished.  Thanks for your time, your experience, your commitment on behalf of all of us. 

*****

The official web site of the San Francisco Bay Area/Peninsula Psoriasis Support Network is
http://support.psoriasis.org/sanmateo2/

For more information about starting a support group, visit:
http://support.psoriasis.org/home/start/

and/or email:
[email protected]

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