(Excerpt from the Quarterly, Issue 50, Fall 2007) This year we celebrated the 10th anniversary of our Annual Patient/Doctor meetings in Toronto, Ontario, Canada. By holding this year’s meeting in Canada, we were looking to give our partners outside the U.S. an opportunity to experience the expertise and camaraderie that our meetings offer.

Click here to see pictues from the meeting.

As in past meetings, we opened with Dr. Grant Anhalt, Johns Hopkins School of Medicine, Baltimore, MD, giving an overview of the disease process to new patients. To give patients a comprehensive understanding of our diseases, Dr. Anhalt began by discussing the basics of the immune system and how it works and relates to pemphigus and pemphigoid. He informed us of the fact that autoimmune diseases as a group is the third largest group of diseases behind heart disease and cancer, with billions of dollars being spent every year in caring for patients. He talked about the difference classes of genes that are associated with our diseases, and what role they play in determining the disease process.

The meeting officially opened at 9:00 a.m. with an introduction by Dr. David Sirois, President of the IPPF’s Board of Directors. Dr. Sirois thanked all supporters and participants and gave Dan Goodwill, IPPF Board of Directors, a Certificate of Appreciation for help in organizing the meeting. Dave also talked about the research the IPPF is helping to fund on definitions and disease outcomes. He closed by thanking all our supporters and participants again.

The next speaker was Victoria Carlan. Victoria is a patient with pemphigus who is very interested in starting a Foundation in Canada. She provided a survey to determine how many members of the audience think that a Foundation in Canada would be an important step for Canadians. Victoria thanked the IPPF staff, Board, Dave Sirois, and all speakers. She specifically wanted to give a special thanks to all the caregivers who help patient manage their disease. She acknowledged how without good caregivers, it would be so much more difficult for patients.

Our host, Dr. Neil Shear, University of Toronto, gave a general overview of the disease processes:  general health status of patients, what expertise is needed, and what do patients need above and beyond the disease and drugs. He talked about the challenges of treating patients: finding the right drugs to use, intolerable side effects, and what the benefits and risks were. He stressed the point that primary care doctors and Dermatologists should work in coordination for the best outcome for patients. He highly recommends network or Foundation in Canada. He acknowledged and showed his excitement for the participation at the meeting of the University’s Residents. He wanted them to interact with patients because he believes that patient advocacy is a huge part of Resident training. He also believes that patients need good advocates and that doctors need to teach residents how to advocate for their patients.

Turning to research, Dr. Animesh Sinha, researcher from Michigan State, East Lansing, MI, talked about how research can pave the way to better treatment and potentially a cure. He focused on T-lymphocytes in the blood and how pemphigus starts and progresses. He explained how T-cells & B-cells work together in the immune system, and when the system breaks down it can cause autoimmune disease. Many diseases have similar pathways, and they are looking at multiple levels of disease – cells, genes, etc. Genetic factors and environmental factors work together to cause disease.

Grant Anhalt, M.D. took the podium again to talk about ongoing clinical trials and what they mean to patients. He explained what a difficult problem it was to get trials going because of the rarity of the diseases. He talked about several trials that are ongoing: Infiximab – Remicade, rituximab, Enbrel and CellCept, and how clinical trials can help patients get approved by their healthcare insurance company once the study is completed. The CellCept study is international with most patients coming from Europe and Ukraine. These studies help patients get the drug in countries where it is not available.

The next speaker was Sandra Knowles, Pharmacist from University of Toronto. She talked about common drugs side effects and drug Interactions, and how they can be confusing. She explained that not all side effects mean you need to stop the drug. Sometimes you can reduce the dosage of the drug, but sometimes an interaction can cause you to change the drug.

She encouraged everyone to develop a good relationship with their pharmacist. It is important to ask questions:  How does it work?  How long does it take to work?  How do I take the drug? etc. Dr. Knowles discussed the difference between prednisone and anabolic steroids – steroids used to build up your body. She stressed the importance of  preventative medicine – bone density, exercise, Vitamin D & calcium. She also discussed the immunosuppressives and their possible side effects and drug interactions. She also suggested we do not to use some of the Ace-Inhibitors for blood pressure.

Dr. Scott Walsh, Dermatologist at the University of Toronto talked about infectious complications and therapies, and what to do about them. Infections can be caused by viruses, bacteria, fungi, and parasites. Some are common, some are rare. Infections usually show up when lesions go without treatment. He cautioned that cancers can develop in immunosuppressived patients. Cytoxan can increase the frequency of bladder cancer so watch for bleeding. Azathioprine can increase the risk of skin cancer while getting a lot of sun exposure. Lymphomas can also occur with suppressed immune systems.

After the lunch break, Dave Sirois, DMD, PhD, NYU School of Dental Medicine, spoke about wound care and pain management. He talked about how to deal with visible lesions. Try to avoid friction and horizontal shearing. Covering wounds can help reduce the impact of trauma and help prevent infection. Keep lesion moist. Do not use adhesives. Bandages with antimicrobial dressings – a new honey-based product was recently approved in the U.S. that seems to work well in pemphigus/pemphigoid patients. Look at dermasciences.com. They are a company that sells bandages.

Robin Silverstein, RD talked next about nutrition and the importance of a healthy diet. She explained that a healthy diet must include protein, carbohydrates, fats. Glycemic index is a good way to judge blood glucose. Lower glycemic foods are better for most people and have health benefits. They increase HDL’s and help you feel full longer.

Our final speaker for the day was Dr. David Sirois who talked about oral medicine, pemphigus and pemphigoid. He said that often a mouth ulcer biopsy may not always be taken properly to diagnose the disease. 80% of PV starts in mouth. Oral lesion pain can be significant. Oral lesions, are the least most recognized. 30% of patients with only oral lesions may not be diagnosed properly. Dental medicine doctors need to be educated to recognize pemphigus or pemphigoid.

As the meeting wound down, the winner of the 50/50 raffle pledged her winnings go toward the creation of a Canadian Foundation. Everyone was grateful for her generosity.

THE PATIENT PANEL

Sunday morning opened with Greg Wright, IPPF Board Member, hosting the event. He talkws about his experience with the disease.  Several participants agreed to sit the dais talk about their individual experiences.  Those on the dais were Victoria Carlan, Alan Papert, Marilyn Targansky, Greg Wright, and Sonia Tramel.

The floor was then opened up for everyone to ask questions, and give their best tips. Most everyone felt that rest is very important when traveling. Some were feeling very self-conscience about their disease, but others agreed that there was no reason to be ashamed. The disease is not your fault, and that being open about the disease can sometimes put people at ease as long as you don’t overdo it. To remember that you are not your disease – It is only something you have. Most agreed that it is was very important to take care of yourself first. Look at your life-style. Do things that can help your spirit and de-stress. That can often help in your recovery. Laugh a lot.

Caregiving was another subject that was brought up. Prednisone affects all family members and it will help spouses and children to remember that steroids can change a person, and try to realize that it is often just the drug.

It was brought to our attention that a good make-up to use to cover lesions is Cover-FX. It can be found online. Oatmeal (Aveeno Bath) bathes can be soothing may help reduce severity.

The meeting then officially ended with applause and warm wishes to friends - new and old.

SPECIAL FEATURES 

Did you miss the meeting? DVDs will be available soon. Here is a small clip to show what they will look like. The files have been modified to allow for viewing over the Internet. The file sizes are under 1 MB but may take a few moments to load once you click on Play. The finished product will be viewable on DVD players and computers in a much higher quality.

Wound Care and Pain Management

Nutrition & Pemphigus

The Oral Connection