Monthly Archives: December 2009

PV, HTML, BP, CSS, MMP… if being a teenager wasn’t already hard enough!
How do you even pronounce it?

by Lillian Dodd
Cristo-Rey High School, Sacramento CA
IPPF Intern

Hi, my name is Lillian Dodd; I am a freshman at Cristo Rey High School  here in Sacramento. Once a week I come in and work here at the International Pemphigus and Pemphigoid Foundation to offset the cost my tuition for school. I update the News and Information section of the website (www.pemphigus.org/news) by adding new articles. In the few months I have been here, I have learned so much about these diseases. Pemphigus is an autoimmune skin disease with symptoms like 3rd degree sunburns or really bad blisters. Pemphigus can spread from you arms, eyes and even the mouth.

When I was at school and they told me where I was working at IPPF, I said “What is that?” When I first saw pictures of pemphigus and pemphigoid I thought to myself, “How painful and sad to have people out there in the world with this on their body and skin.” This doesn’t just affect them — it affects everybody around them. I have learned that these diseases affect everybody in a different way. Generally, only middle aged or older people get this condition. However, Pemphigus affects people of all races, although Ashkenazi decent may be at higher risk. There are 3 ways a doctor can tell if you have pemphigus: visual exam, lesion biopsy, and direct immunoflorescence.

Some of the things I do here are edit/update the website and “ping” them out. I use www.ping.fm to send the articles out to Twitter, Facebook and MySpace. When I send these articles out, our “friends” out there can understand more about what we do and the resources available to them. I’m what you can call an “office assistant”. I also answer phones, reply to emails, copy, fax and mail out letters.

Like most of my generation, I thought knew a lot about the internet, but teens know absolutely nothing compared to a lot of people. Some of the things I have learned here are the “behind-the-scenes” of the internet. If it weren’t for my bosses, Molly and Will, I never would have known the internet like I know it today. I definitely would have never understood things such as coding, decoding, HTML, CSS, etc. And I didn’t realize how much of an impact I made on the patients just by updating the websites every week.

I manage the IPPF Facebook, MySpace, and Twitter accounts. I help get the IPPF name out there to raise money and help find a cure for these diseases. Over the next couple of months I hope to gain more HTML knowledge and experience. I think this will help me later down the road because I want to become a teacher or something to do with working with young children. I think this will help me with creating interactive learning tools. I think knowing HTML will improve my chances at getting a job because as time goes on we are becoming more internet and technology savvy.

Lily

Recently, Richard Schwartz, a terrific person, my friend, and a friend to the IPPF, passed away. Richard had a very bad case of pemphigus when we first talked many years ago. But no matter how difficult a time he was having, he always was hopeful and positive.

For several years, Richard led the Houston Support Group. Several years ago, I visited with Richard and Karen during a support group meeting. They were so gracious and offered me a room in their home, to stay while I was in Houston. On a day off, he showed me around Houston and the NASA Space Center. We had a terrific day. Even after the group disbanded, Richard was always there to help others.

For many years he was in remission – had no disease, and was on no drugs. Unfortunately, he developed bladder cancer. When the IPPF started the Health Management Program, Richard called me and said he wanted to be a part of it even though he was still in remission from his pemphigus. I was so happy to hear from him, but in his always upbeat, matter-of-fact manner he told me about his cancer. I was very sad to hear about it, but he assured me that he was okay and that they had gotten it all.

Karen, Richard’s wife, contacted me in October 2009 and told me that Richard had passed away. I cannot say how sad I was to hear that news. He was such a vibrant personality and just a great, real guy. I asked her if I could write a memorial to him for the IPPF Community. Karen wrote this to me:

“He really cared so much about the IPPF. When he was first diagnosed we felt so alone. It seems that so many of the wound care treatments were basically trial and error. We were very lucky to be in Houston at this time and under the wonderful care of Dr. (Robert) Jordon, but as far as at home care we pretty much on our own.

It was a terrible few months and we so wished that there were more people out there to talk with. Richard wanted so much to be a help to anyone who was diagnosed and needed questions answered…not medical, but everyday questions on living with the disease. He often went to people’s homes and visited with them and also talked on the phone or by e-mail to people all over the world. I know it would mean a lot to him, as it does to me, for you to write a Memorial to him. He always was a supporter of the Foundation, as I will continue to be.”

I, as I know many of you do also, send Karen and her family our sincerest condolences. Richard helped me and many others. His family can find comfort in knowing how many people truly admired Richard.

I know that I do.

In Memory,

Janet Segall

Richard, back row, third from the left, poses with the Support Group
and IPPF leadership in 2004 at the IPPF Annual Meeting in Las Vegas,
NV. Janet Segall (next to Richard, back row, fourth from left)
was a dear friend of Richard and Karen for many years. While the
Houston Support Group disbanded, Richard still managed to help out
newly diagnosed patients regardless of their location.

 

On November 6, 2009, the UK’s PEM Friends met for their regular Autumn Lunch which is always held in London. As usual, it was in Peter Jones, Sloane Square. The management is always extremely helpful and we have all the space we need for a gathering of between 12 and 20 people, and are never hurried or bothered in any way.

This year’s gathering was as enjoyable as ever, although at the last minute five people sent text messages to say they couldn’t make it. We were nevertheless a party of fourteen and as ever, new friendships were forged and old friendships rekindled.

It’s always so helpful and reassuring to be with people who understand what it’s like to have active pemphigus or pemphigoid. Those attending a lunch for a second or third time exhibit such an improvement in their bearing, demeanour and

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self-confidence. I believe this comes from having developed a greater understanding and knowledge of their condition and more importantly, having met up with others in this unique club!

Dr. Jane Setterfield, who has both private and NHS patients in London, was our guest. Unfortunately she was held up at the hospital and couldn’t join us until fairly late on, but those still present had a most illuminating chat with her. As with Dr. Karen Harman, Dr. Setterfield is so generous with her knowledge and answered all our queries in great depth.

From PEM Friends funds, the guest dermatologists are given a £50 Marks & Spencer Gift Voucher as a token of our appreciation.

by Carolyn Blain
PEM Friends (UK)

“From everything we know about pemphigus vulgaris, you’re in remission.”

I just stared at the doctor in disbelief. I think I actually said, “You’re kidding me, right?” Probably not the best response. But he smiled, as did the other two doctors in the room, and said, “No, I’m not kidding.”

It took me till I left the appointment, got in my car and was stuck bumper-to-bumper in Boston traffic to realize that I had done it. I had licked this insidious disease – well, as licked as an autoimmune disease can get. Anyone who has battled one knows that there is always the chance that it will rear its ugly head again – “not curable, just treatable,” is the refrain we all hear way too often.

I was in Tennessee this week, seeing the colors of the trees burn across the ridges, and feeling the fall induced opportunity to feel gratitude. As you get this, we’ll all be deep into the holidays and winter, giving us a chance to reflect on the gifts of the year.

Some things we’ve had a chance to be grateful for this past year include the vision and inspiration that Janet dedicated to the cause of helping those with a “common bond”, the courageous/relentless visioning of the future by Dave Sirois, President of your Board, whom I work with weekly on our strategic plan to

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make headway in awareness, research, treatment and advocacy. And, the rest of the Board each gives, above and beyond, of their own special talents.

Will, of course. He gives his all, all the time, (my favorite is, “Sure, I can do that!”) with a wealth of expertise and skill and energy to learn new things that is beyond compare. Thanks, Will, for it ALL!

And, of course, each of us is so grateful for the generosity of others who share your concerns and are moved to making a difference. The Double the Difference Donation-Match Campaign inspired over 200 NEW donors in 2009 and over 41 donors gave more this year than they did last year — and there’s still one month to go! Please consider the impact a donation this year could make when you receive your holiday fund-drive mailer — and give your feedback on what you care about, it matters to all of us!

With these funds we have build an online data registry to make data collection faster, easier and more accurate (see information about our 1010 in 2010 drive on page 5 of the printed Quarterly); we are partnering with National Disease Research Interchange (NDRI) and the NIH to begin blood and tissue sample collection to be used for direct medical research; and we have trained and added two new Peer Health Coaches, Marc (BP, in the West) and Yvette (PV, in the East) to get more patient questions answered faster and more conveniently; finally, we will be hosting a Scientific/Medical Consensus Conference of the luminary P/P doctors worldwide and an audience of over 150 doctors, in the Fall of 2010 in conjunction with the NIH. There, the goal is an agreed-upon, evidence-based protocol that can be shared with doctors with less expertise, to improve treatment outcomes and a discussion of promising discoveries at the cellular/immunological level. These conference should result in at least two publications advancing medical knowledge of P/P worldwide. And the IPPF 2010 Annual Meeting, of course!

Which just leaves the over 4,000 of you we communicate with monthly by email, the over 600 who choose to subscribe to our paper newsletter, the 4,600 who read our newest news and information in real time on our News & Information site http://www.pemphigus.org/wordpress/category/news/, Facebook, and Twitter, and the more than 350 new patients who personally contacted us this year!

Each of you gives — in the thank-yous you share with us, in the discussions you have with your neighbors, in the awareness building projects you develop in your communities, in the outreach you do to others that are hurting, or confused, or afraid, in the courage with which you move forward. Your time, and a hand along this journey, are gifts beyond measure.

Blessings,


Molly