Monthly Archives: June 2010

In the latest effort to break up the often cozy relationship between doctors and the medical industry, the University of Michigan Medical School has become the first to decide that it will no longer take any money from drug and device makers to pay for coursework doctors need to renew their medical licenses.

If you turn on a light switch for a room to illuminate it and then the television, do they both use the same amount of electricity? The answer is no, they do not.

It felt as if a small village illuminated with full power at the Annual Patient/Doctor Meeting held at the Sheraton Society Hill Hotel in Philadelphia. When I arrived, my room was ready. So I did some quick sightseeing with Janet [Segall, IPPF Founder]. Philadelphia is historic on its own; the crack in the liberty bell like the crackle of electricity was something of which to be in awe. When you combined the location, the group of rarities that we all are, and the wonderful speakers and sponsors, I have to tell you, popcorn was popping!  What a way to get in the mood!

Speaking of sponsors, a heartfelt “Thank You” goes out to Centric Health Resources, AxelaCare, Crescent Healthcare, National Rehab, and Alwyn Cream! Their continued support helps meetings like this one reinforce the Community concept!

Friday night’s mixer was very relaxing.  Those in attendance could mingle with each other, the doctors, the sponsors, Molly [Stuart, CEO] and Will [Zrnchik, Director of Communications]. I chose to sit with a small group of women for a bit, then went from table to table and began just asking people who they were.

One big table had me repeat the names, and I did pretty well until the last one. I blamed it on the prednisone. I introduced some to others that were in search of answers to some questions. I sat back and observed the camaraderie of the group. Intense conversations and laughter filled the air. Will was on spot when I whipped out my camera – as if on cue, he turned his head and smiled.

Saturday’s breakfast was magnificent, and I felt so much better once I had my café mocha with a shot of hazelnut. Oh, I was a happy little camper and ready for anything with a big old smile on my face. Everything seemed as if it was in its own perfection. The booklet with the weekend layout was great in the sense that you could follow along. I sat in the back, listened to Dr. Grant Anhalt’s presentation, and understood it.  Please allow me to take a moment and thank whomever it was that came up with the idea of espresso in the morning before medical doctors and panels spoke. I believe Gloria Papert did an excellent job of keeping the times allotted for speaking. She is such a jovial woman; you could not help but smile when she spoke to you.

The breakout sessions were clearly marked, and I chose to listen to NDRI, which stands for National Disease Research Interchange. A lot of interesting information on donating tissue and blood samples that is extremely important in order to one day have a cure. I grabbed a booklet, but have not had time yet to fill out the information. I, for one, am totally for this. My skin comes off with the PV anyway, so I am not missing anything.

The Awards Luncheon was tasty! Dr. Jean-Claude Bystryn received the Founder’s Award and Janet accepted it on his behalf. I personally would like to wish him a full recovery from his illness. I have only met him twice,  but can see that he has dedicated his life in hope of controlling these complicated diseases.

I have to admit I was floored when Molly announced an award for my writings. I was not expecting anything of the sort, but it meant a lot. I just have a gift of gab. Somewhere I can hear my mother telling me to keep quiet, but she is smiling in her heart.

When lunch was through, Dr. Ani Sinha gave a very informative lecture on Why Do Patients Have Flares?  My second cup of espresso kicked in during his question-and-answer session. Dr. Dave Sirois had a breakout on Oral and Dental Care. Something interesting with Dr. Sirois: During the raffle, he whipped out about a dozen tickets. That was ok, except I noticed he did not put the other halves in the boxes. I informed him of this and his statement was, “Well that explains why I never win anything!”

Saturday evening was “on your own” or a movie night and many people decided to go out, which was nice. I ate dinner with a small group and enjoyed their company immensely. I love to hear stories as well as tell them. Brian Cleary from AxelaCare was like a personal map/tour guide because Philly is where he lives.

I felt for Will, he was running around like a mad man all weekend and his coffee was usually cold. He gave up his animal printed tie to me to add as a band for a sundress I am making. He just had to explain it to his other half. Wonder how that went… 😉

Anyway, bottom line is that the lights did not go out. With a walk to Penn’s Landing to see the old masted ships in the harbor, I went back to the hotel and had a “special” decaf nightcap. Unfortunately, I had to leave early Sunday to come back to my family. It was nice to run away for a weekend  and share something that so few of us know.

To my other family, thanks for the laughs, the conversations and the fun. You are the entire “crack in my bell” — but the electricity is what keeps us connected.

We’re fresh off of the delight of connecting with everyone available at the Annual Meeting (AM) in Philadelphia. Read more in this issue and visit our website at www.pemphigus.org/2010AM for additional materials.

The IPPF capstone project for 2010 is documenting 1,000 pemphigus/pemphigoid patient medical data records in our Registry — launched at the AM. This many records in the registry places us in position to ask for funding to support a research grant, inspire a scientist to conduct research, or provide data to move drug company developments in treatments.

Last year we addressed personal patient support needs with the Health Management Program (HMP). If you need personal support managing your disease, have specific questions, or want to discuss options with someone who’s been there, you need the Health Management Program and a relationship with one of our Peer Health Coaches (PHC). (See Dr. Sirois’ article on the demonstrated benefits in improved heath from participation on page 4)  Let us know and we can set you up.

The Registry is an animal of a different stripe. In the Registry, instead, we need something from each one of you  — we need your data — all confidential, of course (read more about our Registry’s privacy policy at www.pemphigus.org/registry-terms). Not “we” so much, but P/P patients of the future. For the benefit of the future collective of P/P patients, we need you to complete the registry so your challenges can be counted and addressed.

We will be sending every patient that we have email contact with a unique log-in to privately enter your information from your personal computer. Please, please take the 15 minutes or so to document your experience and illuminate the urgent needs of this community — for awareness, resources, scientific discovery and everyday solutions. Last year we asked you to dig deep to help us leverage the opportunity for a matching grant of financial support. This year we need to dig deep to make the collective of your voices and experiences heard — for everyone’s progress.

We are at an exciting milestone, providing proof of the burden of disease and the path to discovery of effective new treatments. Please dig deep, once again — this year with your time — to support this community.

If you don’t, who will?

Three years ago a joint task force of the IPPF comprised of expert members of our Medical Advisory Board, Janet Segall (IPPF Founder) and Centric Health Resources (a Missouri based company dedicated to improving the quality of life for people nationwide with rare, orphan, ultra-orphan, and chronic genetic disorders), conceived and developed a Health Management Program (HMP) with the goal of improving illness experience by providing patients with educational resources, personal support and improved access to doctors and medicines. How did they decide to make all that happen?

At the 2010 Annual Meeting in Philadelphia there were many patients and doctors who have consistently attended the meetings as much for fellowship as for information. There were also patients who were newly diagnosed and needed basic education on pemphigus/pemphigoid. Anyone who has attended these “marathon” weekends knows first-hand how much information is disseminated through lectures, expert panels and town meetings. It can be a bit daunting and always takes time to process, in addition to being exhausting. From past conferences, it has been my experience that by Sunday morning most people have left or are mentally unable to comprehend any more. It was a pleasant surprise this year to find so many still present on Sunday and eager to learn more!

This year I facilitated a group that gave patients time for face-to-face interaction, allowing them to talk in a more conversational way. I was privileged to talk with (not at) other patients with P/P at a breakout session on Sunday morning.

The purpose was to allow patients to share their experiences with each other. Instead of sitting in a panel or conference style, we arranged the chairs in a circle to make the room more conducive to a conversational experience. My purpose was more to guide the group than to “present”, since our experiences have consistently shown that people need to be heard as well as educated. What patients learn from each other is often more important than what can be learned otherwise. Lifelong friendships are made and validation occurs.

Those who attended this session were different ages, nationalities and genders; we also had patients with years of experience and those who were recently diagnosed. In addition, several caregivers attended.
Once people started to introduce themselves and talk about their experiences, the energy level in the room just took on a life of its own. People started to identify with others’ experiences, and the group dynamics changed. This year, we were scheduled for one hour, and fortunately no one threw us out when we went past our allotted time. Will, in his own “Will way”, did let us know this could happen at any time — but it didn’t. Thanks, Will!

Smaller groups of people began to talk to each other more toward the end, as they related to each other’s stories and experiences in getting diagnosed and treated and could share their own similar experiences. Since this was the purpose of the session, I was pleased that we had met long enough for that to occur. I also gave patients in attendance some inventories to complete on their own to give themselves a better idea of the psychological/emotional toll that these diseases can and do have on both patients and caregivers. A few people have since let me know how helpful it was for them to have words to describe the way they are feeling.

As I told the group in attendance, if someone walked into my psychology office and told me that they had received one of these diagnoses and that they were just fine I would want to know how that could be. The only defense mechanism which allows people to not be affected emotionally is denial. There also remains a number of people who are unaware that the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM) does recognize that patients’ emotions can be affected by certain illnesses (e.g., 293.83 – Mood Disorder Due to. . . [Indicate the General Medical Condition]).

As some with alcohol problems have discovered, Alcoholics Anonymous (AA) allows people to become — and stay — clean and sober by having meetings and sharing stories. Since it is so helpful to talk with others with the same diagnoses but different stories, I have begun to wonder if we may want to begin thinking of our own Twelve Steps. Just a thought…

Remember to take care of yourselves and to not give up hobbies and activities that have provided joy in the past, unless you are no longer able to do them because of your health. And, if that is the case, try to find a substitute hobby or activity to keep joy in your life. This may be challenging, but it is absolutely necessary for your mental health. Stress takes an enormous toll on our physical health, as well as our mental health, so continue to work on more positive coping strategies.

If you need help with this, do not hesitate to ask for it.

At the Annual Meeting a few weeks ago, and on the feedback forms that we received, a lot of people made note of how hard it is/was to follow along with all the acronyms that those of us immersed (in any subject) tend to throw about. This is especially true for people new to a group, feeling unfamiliar with the meaning of lots of new terms. It seemed clear that many people are still wondering which IPPF program is most appropriate for their level of engagement with the Foundation and the “cause”.

There are so many “jobs” to do in building a better experience for P/P patients: Someone needs to tell doctors about the symptoms and treatments; someone needs to go show their wounds to interns and dentists; someone has to write newsletter articles; someone has to offer their expertise with different medicines and share their wisdom; and someone has to accept help from those that have also suffered in order to get better themselves. What can you do, that fits your needs and upholds the value of service and compassion for others on your path?

 

Know your Acronyms!

PPR:  “The Registry” Here, P/P patients submit data on their disease activity and medicines. The form is online and you can fill it out from home at any time. It takes about 15 minutes, only once. So it’s super easy in terms of what you have to put in. The catch (of course there is a catch to a sentence that starts with “super easy”) is that we need AT LEAST 1,000 people to do this in order to have enough data to influence any argument for research or funding. Finding 1,000 PEMPHIGUS/PEMPHIGOID patients isn’t so easy — as you well know!  We have a “job” that ONLY YOU can do. We need you to put your data in. Everyone of you. Everyone.

If this resonates with you and you have the energy to do more, then get the word out to every other P/P patient there is… ask your doctor if they will forward a link to the registry to others they treat; send requests to Dermatology Chairs at teaching hospitals; ask/remind your Facebook® Friends and encourage your Forum and Discussion Group buddies. If you have other ideas share them too, growing the impact even further.

HMP: “Health Management Program”  The HMP is an over-time series of surveys of your current state on that day, combined with the opportunity to discuss these experiences at the time, with a Peer Health Coach (see next column) who is there to advise you (and maybe even nag/inspire you) on advocating for your own best care with the best information currently available. They can weigh the pros and cons of different options, suggest everyday soothing strategies and forewarn you about things to be on the lookout for. They also will always stand by in helping you get the most out of your time with your doctor — or suggest a better one. This program is a huge investment of the patient’s commitment, the Coach’s dedication and the mission of the IPPF. If you need better care, the HMP team is here to make it happen.

PHC:  “Peer Health Coach”  Peer Health Coach refers to another P/P patient who goes through an extensive training process — on disease processes, medications and side effects, privacy security, and interpersonal motivation and support. This demonstrates the HIGHEST level of commitment that one can dedicate to the service of other patients, and is the culmination of moving through other patient support opportunities such as:

Peer Support Coach:  You are interested in learning more about this disease, medicines, and are willing to do a little bit of online training on medical privacy and recording data about calls to help patients to the right resources.

Support Contact: (Local or Disease Specific)  Want to make yourself available to talk with someone who’s seeking support in geographic area? You may offer to allow the IPPF to give out your name, email or phone number to others who want to talk to someone. It won’t happen a lot, but you would then be relied upon to reply to this patient in need.

In the Health Management Program, rest assured the resources of knowledge, experience and expert doctors work to prepare you to handle your health better. When you enter your data in the Registry, you help others handle their health in the future by providing researchers and front-line doctors information to pursue better treatments. Anything in-between just makes the support of our net wider — we appreciate you doing what you can.

This year’s annual meeting in Philadelphia was again a huge success because of the tremendous amount of information, knowledge, research and hope made available to patients and caregivers. It was also a family reunion for some of the regular attendees strengthening the bond and giving a “renewal of commitment” between existing patients. It’s really fantastic and encouraging event. It is a wonderful feeling to know that some patients in partial remission make the extra effort to attend these meetings thereby giving support to our new friends.

The different venues for the IPPF Annual Patient/Doctor Meeting give us an opportunity to visit different states each year. We really enjoy going to these conferences because it is such an amazing source of face-to-face interaction. We schedule attendance to the meeting as a family pilgrimage. It also brings back the core values and keeps us aligned with the reality of this disease. There is always something new to learn, and it’s all made possible by the great and generous people who have been working for us on our rare disease research projects.

As a patient, it connects to existing patients and also gives the opportunity to share successes and disappointments. After six years of trying to stabilize the disease, it gives a sense of confidence to be able to give advice and information to new patients. Knowledge is power and the more we learn about our disease, the more we would be able to handle and control our flares.

As a caregiver, it realigns the commitments necessary to continue to support your loved ones and to share learnings with new caregivers.

We recognize and thank everyone involved.

Autoimmune (AI) diseases affect 30 million women—three times more than men—and diagnoses are rising in autoimmune disorders as varied as lupus, celiac, Sjogren’s syndrome and multiple sclerosis. But science has fixes in store. “We’re learning to detect disease earlier,” says Noel R. Rose, M.D., director of the Johns Hopkins Autoimmune Disease Research Center in Baltimore. “With new treatments, we hope to head off the worst symptoms before they appear.”

Genetics and Family History

If a close relative has an autoimmune disease, you’re more likely to develop one yourself. A mother with Graves’ disease may have a sister with MS and a daughter with type 1 diabetes. “Research has identified more than 150 genes associated with AI disease, but since there’s no one specific gene, it’s hard to determine a single cause,” says Peter K. Gregersen, M.D., of the Feinstein Institute for Medical Research in Manhasset, New York. His next project: a study of women who have lupus and their sisters who do not, to uncover the factors that lead to the development of the disease; if this is you, consider enrolling at SisSLE.org.

Environmental Factors

Chemicals, viruses—even food—can spark autoimmune disease if you’re genetically inclined. Gluten in some grains, for instance, activates celiac disease. Experts suspect other triggers: The mononucleosis virus, Epstein-Barr, is associated with MS, lupus and rheumatoid arthritis. Industrial chemicals such as PCBs may be associated with type 1 diabetes. And too much iodine (e.g., sodium-loaded processed foods) may play a role in the rising rates of autoimmune thyroid disease. “Understanding these environmental components will be crucial to preventing future disease,” Dr. Rose says.

Intestinal Fortitude

Why do environmental agents that don’t hurt most of us wreak so much damage in others? The vast majority of people with autoimmune disease have a “leaky” small intestine, which allows foreign substances to penetrate the bloodstream, causing the immune system to overreact, says Alessio Fasano, M.D., director of the Center for Celiac Research at the University of Maryland School of Medicine in Baltimore. His research has proven it is possible to prevent type 1 diabetes in rats by fixing the intestinal barrier. Larazotide, a drug aimed at restoring normal intestine function, is in clinical trials in celiac patients.

Hormone Imbalances

“There’s no question hormones play a role in autoimmunity,” says Frederick Vivino, M.D., chief of the division of rheumatology at Penn Presbyterian Medical Center in Philadelphia. Low levels of androgens are associated with Sjogren’s syndrome, a gland-drying condition. Estrogen may play a varying role—lupus often worsens during pregnancy, when estrogen skyrockets, whereas MS and rheumatoid arthritis may improve during pregnancy and then flare up postpartum when estrogen drops. Estriol, a form of estrogen made by the placenta, is currently in early-stage clinical trials as a potential treatment for MS.

Cellular Science

What if you could “reboot” your immune system like a laptop? In stem cell therapies, drugs wipe out old immune cells, then doctors replace them with fresh stem cells from your bone marrow or blood, says Richard Burt, M.D., chief of the division of immunotherapy at Northwestern University in Chicago. It’s too soon to know if it’s a permanent cure, but so far, it has put various autoimmune diseases in remission. Also, suppressing B cells, immune agents that identify intruders, can successfully treat rheumatoid arthritis. Benlysta, a drug that starves B cells, may become the first medicine approved to treat lupus in 50 years.