Category Archives: Columns


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!

Terry Wolinsky-McDonald, PhD (PV patient and IPPF Board Member)

The holidays and end of year are nearly upon us as I write this article.  This time of year brings so many different and conflicted feelings for most people, usually very personal and emotional.  As noted previously, while so many look forward to so much, many people have bittersweet memories and difficult standards and goals for which to strive during the holidays and into the New Year.  It is a time for remembering activities and traditions of previous holidays but also the losses (health restrictions, jobs, life styles and people). For some there have also been improvements in health and treatments and new traditions.  Others hold onto the more troubling thoughts and feelings and have great difficulty moving on.  Sometimes the illness itself is not responding to treatment yet or is being stubborn and brutal.

Tears often represent unresolved sadness and grief, in addition to actual clinical depression.  When living with chronic illness patients and caregivers can’t help but experience, a mix of depression and anxiety from changes in the status quo.  After all, chronic illnesses don’t go away, which is why they are called chronic to begin with.  Seeing family and friends, not seen often, during the holidays often brings people into the position of being seen as SICK and HELPLESS or being told they look BETTER and so must be doing/feeling better.

And, don’t forget that tears can be positive, too.   I often tell patients that tears are allowing toxins to leave the body; who doesn’t want a less toxic body?  People also cry when happy or just plain sentimental.  I have one friend who never ceases to make me laugh.  I keep telling him to take his act on the road!

Sometimes it is just easier to not discuss at all since “chronic illnesses” seems to be such a mystery to so many, especially a rare or ultra rare disease. One person I know actually carries around a few copies of the dictionary definition of chronic in order to avoid explanations. If there is loss of energy it may feel like running a marathon just getting together with family and friends, even when not trying to “host” the holidays or a get-together.  Travel can feel like a triathlon; sometimes just getting out of bed, let alone the home, can be excruciatingly difficult.

The essential ingredient in getting through this is acceptance; think of acceptance as the main ingredient in the recipe.  If unable to get to acceptance, try putting hurtful feelings on hiatus in order to get through difficult periods.  I do not advocate pushing yourself beyond your limits, but one thing psychologists learned from the “behaviorists” (Skinner, Watson, et al) of the 1960’s is that one does not have to feel wonderful or have tremendous insight to effect changes:  making changes, even small ones, can actually make you feel better.  For example, just going to a gathering may make a person feel better, even if there is a need to leave early.  Getting more dressed up, and seeing oneself in a mirror, allows the person to see themselves more as they once were and may again be.

Fears of the uncertainty of it all are real and often keeping anxiety high or ever-present. With chronic illness one never knows what the next day will bring.  Expectations of what one can or cannot do may be unrealistically high or low.  In either case, anxiety may remain a constant.  Some people even have actual panic attacks, where they have trouble breathing and chest pain, simulating a heart attack.  If on high doses of a medication like prednisone, life will feel like a roller coaster . . . because it is!

Medications can help, and are often necessary. Therapy can teach new ways of coping that will be absolutely necessary to get back in (limited) control and to accept to help move on.
Sometimes techniques can be learned in therapy or from self-help books.  I am not a great fan of most self-help books, but new ideas and ways of handling things will be helpful, however they are learned.  When new circumstances take people back to old unresolved events or issues that is when psychotherapy will be absolutely necessary.

Fortunately the stigma once attached to the need for psychologists and psychiatrists has changed for most of the population.  Asking for help in just understanding why one feels as they do is the first step in taking this course.  The support and understanding of others, your support system or lack of one, is never to be underestimated.

So, where are the cheers to come from?  How about improvement in the illness’ impact, adjustment to this new life, just being able to sit comfortably or to eat and enjoy food again, feeling more stable, being in partial or full remission, fewer or less harsh drugs?  Any or all of the above and so much more are cause for celebration.

What are my recommendations for the holidays and New Year?  Take a lot of pictures to help create new memories; try at least one new thing; let the people you love know how much you love and appreciate them in your life; smile more; let go of small disturbing things; say hello to someone you don’t know.

Cheers to all for a happy and healthier New Year.  Remember, the IPPF Annual Meeting will be in Detroit in 2011 – May 20-22 – a time to learn from the experts, meet or reunite with others, and to feel connected.

I hope to see you there!