Yearly Archives: 2011

by Kirsten R Bellur

It is almost four years ago that, after many failed attempts, I was finally accurately diagnosed with Pemphigus. In the face of that solemn pronouncement, I was told there was good news: it was only Foliaceous, a more benign form, that was easily treatable with Prednisone. And under that treatment it would most likely go away. But this sanguine vision and mitigating explanation of the seriousness of the illness did not obviate the fact that I was unable to regain the integrity of my skin.

By Rebecca Berman, Janet Segall and Jean-Claude Bystryn, M.D. from The National Pemphigus Foundation and The Ronald O. Perelman Department of Dermatology, New York University School of Medicine, New York, NY. February 17, 1999

As many of you know, we recently conducted a survey of persons with pemphigus to find out 1) which treatments were most commonly used, 2) which appeared to be the most effective, and 3) which were most often associated with side effects. The survey was conducted by means of a questionnaire enclosed in the Fall 1998 issue of the National Pemphigus Foundation newsletter, the Quarterly. The questionnaire was also sent to all individuals who responded to a notice on the NPF website.A total of 110 responses were received. This number is impressive, taking into account the rarity of pemphigus. We thank all participants for their collaboration.

Following up Merck’s doctor-payment disclosures, Pfizer and GlaxoSmithKline posted their numbers. And perhaps befitting to the world’s largest drugmaker, Pfizer spent the most: $177 million was doled out to doctors in support for clinical trials and speaking fees. GSK’s payments were slightly less than half that, at a total of $85 million for trials and speaking.

For Pfizer, the lion’s share went to research; $108 million of its total spending supported clinical trials and related work. A chunk of the rest went to doctors for speaking on behalf of the company. Some 4,600 physicians collected a total of $34.4 million, or $7,400 on average. Then there was $18 million in free meals, $8.9 million in advisory fees (paid to 1,400 doctors), $5.8 million for travel, and $1.7 million for education.

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David Muhwezi, the 14-year-old boy whose body is covered in wounds, has been diagnosed with a rare skin disease, Pemphigus. According to the International Pemphigus and Pemphigoid Foundation (IPPF), Pemphigus is an autoimmune disease that affects the skin and mucous membranes.This means that the antibodies produced by the immune system to fight diseases mistakenly perceive skin cells as foreign and attack them. This causes burn-like lesions or blisters that do not heal naturally.

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Methotrexate is often used to control pemphigus and MedlinePlus lists some warnings you should be aware of. ALWAYS discuss your care with your physician before making any changes to your treatment.Methotrexate may cause very serious side effects. Some side effects of methotrexate may cause death. You should only take methotrexate to treat life-threatening cancer, or certain other conditions that are very severe and that cannot be treated with other medications. Talk to your doctor about the risks of taking methotrexate for your condition.

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Through a series of Danish studies utilizing the nation’s comprehensive electronic medical and pharmacy records system, investigators concluded that more than one in three new prescriptions for creams and ointments for dermatologic diseases is never picked up. And for those who actually do fill their prescriptions, treatment adherence just goes downhill from there.

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Miki Pangburn, PV

With a specialty degree in Dermatology and a sub-specialty called Dermatologic Immunology/Clinical and Laboratory Immunology, Dr. Grant J. Anhalt is also a golfer (like that’s a surprise)! His lowest handicap has been a 13, but currently an 18…. “and climbing” he states. The cherries are disappearing in that pie, eh doc?

Dr. Anhalt was born in Shaun-avon, Saskatchewan, Canada (that is quite a mouthful) – which is a tiny town just north of the Montana border. “Do not go there in the winter,” he says.

He finished medical school and residency in Winnipeg. Then he was accepted to the dermatology training program at the University of Michigan. For an unknown “Canuck” (his word, not mine) this was a marvelous opportunity! Although he had interviewed with most of the Ivy League schools as well as the NIH, he decided to stay at UofM and work with Dr. Luis Diaz because he had the most appealing ideas and projects involving the high-impact, blistering diseases, pemphigus and pemphigoid; and Michigan is one of the best training programs in the United States.

He did his research fellowship with Dr. Diaz. During this fellowship, Dr. Diaz and Dr. Anhalt managed to produce the first animal model for pemphigus, using a neonatal mouse. That model has became the standard for examining how the disease behaves. Because of this success, he knew this would be his path in life for the next 30 years. The entire team, consisting of four doctors, one secretary and one technician were recruited to join the faculty at Johns Hopkins in 1982.

Down the road a little bit, he saw a patient that had a very puzzling illness. At different time points, he was thought to have drug eruptions like pemphigoid or Stevens-Johnson syndrome. He also had an underlying lymphoma. Dr. Anhalt was not sure what he had, but he did have evidence of pemphigus antibodies, which clinically did not make sense. He purified the patient’s antibodies and injected them into a neonatal mouse and that caused the typical lesions of pemphigus. With the help of Dr. John Stanley, the patient’s antibodies recognized a unique group of epidermal antigens, and Dr. Anhalt was then able to find a number of patients who had a similar disease and identical antibodies. Because all of these patients had an associated lymphoid malignancy, he named it paraneoplastic pemphigus.

He views the development of the animal model for pemphigus, and the first description of PNP as the major accomplishments in his career. Managing to publish articles on both subjects in the highly esteemed New England Journal of Medicine was no small deed considering they dealt with dermatology issues; usually more common diseases such as neurological, pulmonary and rheumatologic get more pages in leading journals.

I asked him if there were distinctive patient stories he remembers in his career. One in particular was about 20 years ago when a young man who had horrible pemphigus and was close to death contacted him. He had been treated in New York and at Yale, but his disease was out of control. Rituximab was non-existent, so using the treatment combination of cytoxan and plasmapheresis, Dr. Anhalt turned his disease around and he recovered. One of the nasty side effects of cytoxan is that it can cause infertility. Thinking ahead, they managed to bank the patient’s sperm before treatment, and the patient now has two beautiful teenaged children! He continues to be in a drug-free, complete remission. The grandparents still send Dr. Anhalt bottles of wine every Christmas as a thank you!

Grant Anhalt, MD and IPPF Medical Adviory Board

Another memorable moment was when asked by a rheumatologist at Hopkins to see a woman from New York. She was totally crippled by bone pain, fatigue, and pig-headed “hives”. She had seen about 50 “experts” in New York and Los Angeles without any relief. Her broad workup showed that all she had was an underlying asymptomatic monoclonal gammopathy (this means an elevated level of a specific protein in the blood). Recognizing that she had an extremely rare disorder called Schnitzler’s Syndrome, he put her on and injectable biological drug that is used for rheumatoid arthritis. Within 24 hours, she was symptom-free for the first time in eight years.

Dr. Anhalt says key advancements in P/P from a physician perspective, include several remarkable landmarks, including the identification of the pemphigus antibody by Drs. Beutner and Jordon in the 60s, the identification of the pemphigus antigen by Dr. Stanley, and the development of the animal model for pemphigus by Drs. Diaz and Anhalt in the 1980s. From a patient standpoint, the only thing that matters is getting rid of this terrible disease.

In the early 90’s, Janet Segall, founder of the IPPF, contacted Dr. Anhalt to help with this endeavor. “So many patients have told me that during their ‘darkest days’ the single most important thing that brought them through their struggle was the knowledge that there were other people out there that were also dealing with this. There was hope, and there was a mechanism by which they could be connected with physicians who actually knew something about the disease and how to get them beyond this.” An important role of the IPPF remains in patient and physician education. Dr Anhalt was forward thinking, even in 1994. He knew that “only through the internet we would be able to communicate and educate about these orphan diseases. Every disease now, no matter how common or rare, has its own constituency and demands for money and attention. We can only succeed if we are more effective in this competition, and that competition is taking place online.”

Reminding us of the challenges facing research funding — especially for rare disorders — Dr. Anhalt says, “Patient supported Foundations do not have the money to support basic research, which is incredibly expensive (many hundereds of millions), and is funded by research organizations such as the NIH and pharmaceutical companies, however, the recent initiative by the IPPF to form a Patient Registry and biological specimen collection is incredibly important to future research, and is something that they can actually complete — given some additional money through strong fundraising efforts.”

Doc has a very busy schedule! With the love of teaching in his heart, two mornings a week, he reads immunofluorescence biopsies in the department with the faculty, residents and fellows to help them understand the immunologic diagnosis of these diseases. Personally, I enjoy a good mystery. Two afternoons, he works one-on-one with the residents seeing patients at Hopkins. Wednesday mornings are slotted for rounds. Residents are taught how to diagnose and manage these very difficult clinical cases.

On a personal note, Dr. Anhalt has been my lifesaver for the last 10 years! He can be very technical like any other physician. But he has drawn me pictures because my brain does not always follow the medical jargon. Sometimes we agree to disagree, and we are both okay with that. He is more than my doctor, he is my friend and I love him with all my heart. He loves me too, although he does not say it all the time, I coax it out of him along with a chuckle. Like he has a choice….please!!

Dr. Anhalt is married with two grown sons and an adorable little dog. He spends what spare time he has with his family and getting haircuts. He is asked to give talks all over the world and takes his wife Audrey with him when possible. Together, they enjoy visiting and sightseeing when time allows. His hobbies, besides golfing, are coin collecting and woodworking. He lives in Maryland and I believe somewhere on his feet there are roller skates, although I have never seen them!

A painting by Flemish painter Dr. Hugo Heyrman has forever changed how I now think of the stages of life.  The name of the painting which has touched me so deeply is “City Leaf”.  There is a special beauty in a single green leaf, that looks perfect, but is actually very vulnerable as it blows in the wind.  The leaf is, of course, already dying, but its special beauty in the moment is unmistakable.

We all know, on some level, that from the moment we are born we are dying.  This fact takes on a more special meaning when we are diagnosed with a serious chronic illness.  There is nothing pretty about these diseases when only observed medically, but we have choices:  We can either consider every day as another 24 hours moving us toward death, or we can feel even more alive and appreciate every day even more.  Yes, some days are definitely more challenging than others, but we have the choice of being even more grateful to be here and with constantly improving treatments adding to quality of life, or we can be resentful of things we may have to change and activities we may no longer be able to do.

As we (who live in geographical areas which have seasons) go through the summer months, with autumn approaching, we will soon see the beauty of autumn and the changing colors of the leaves.  I have vivid memories of the second skydive I ever did.  Just two weeks before the trees were all green and bushy; now it was late September, and I will never forget the sight below me when my parachute opened.  It was truly awesome, with all the trees below changing colors and those colors being so beautiful that they literally took my breath away.  It was a truly awesome and unforgettable site.

I mentioned this observation to a patient, about how beautiful the fall foliage was, and all he could think of was that they were dying.  He was unable to see the beauty in the moment.  Hugo’s “City Leaf” is still green and beautiful in the moment, but nonetheless dying, as all living things are.

Many physically healthy people reach mid-age (whenever that may be for any given individual) and only see their lives as half over – usually thought to be the best half.  For those of us with chronic illness, many of us are just so grateful to be alive and treatable that we more deeply appreciate every day we are given, once the illness is under reasonable control. We don’t think of our glass as half empty, but rather either half full or a glass that still contains water.  In a way, these illnesses help put things in perspective, much like that second skydive did for me.  There are so many more beauties in life than most people see. I think that was why the Tim McGraw hit song “Live Like You Were Dying” resonated with so many people.

“Mindfulness” can be thought of as the opposite of “mindlessness”, just going through the motions of everyday life vs. “being in the moment”.  For a number of years the psychological term “mindfulness” was just another catch phrase; however, now the research is proving to us that mindfulness cognitive therapy is having a great deal of validated success in a wide range of areas.  I always keep the lighting in my office low, with lamps versus overhead lighting, and there is always a candle on a table between sofas and chairs.  Sometimes, after teaching a patient to slow down and deepen their breathing, I will ask them to just focus on their breathing and the candle.  I will then systematically turn off all of the lamps.  Patients always report reduced anxiety and stress levels with just this one simple exercise.

As autumn approaches for many of us, and leaves change colors as they begin their fall from the trees, pay close attention to the beauty in the fall foliage.  Try to just stay in the moment, and you will experience a decrease in stress levels and intrusive thoughts.  You will be amazed at how easily this is accomplished.  Once diagnosed with your (or a loved one’s) illness it may feel like the autumn of your life.  Remember that after the leaves all fall and most trees are bare, the winter will lead into the emergence of spring – a rebirth in a way – with summer not far behind with its own special beauty.  Allow yourself to thoroughly enjoy the autumn season, knowing that it is taking us into a new season and that the cycle will continue.  Many people say that a picture is worth a thousand words.  In the case of “City Leaf” this is very true.

Focus on being in the moment and truly enjoy the pleasurable and beautiful ones.  Mindfulness is not just a psychological catchphrase, but a way of being in the world.  It adds to our lives.