Monthly Archives: February 2011

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.

Answers from the IPPF Peer Health Coaches

Q: I’ve heard of some success with tacrolimus ointment for BP — thoughts?

A: Some doctors report success with tacrolimus ointment for BP, that it can help limit the use of more potent topicals such as clobetasol, especially in atrophy-prone areas of skin (vulva/anal). However, also note its black box warning and side effect of malignancy risk. Albeit a controversial and by no means universally accepted risk, the FDA labeling remains. Discuss uses and side effects of this as compared to other options fully with your doctor.

Q: Which of the insurance companies cover newer biologic therapies and what can I do if mine insurance is resisting?

A: From what we know currently, although insurance formularies (list of covered drugs) change frequently, for IVIg; United Healthcare considers it experimental. If you are up for the fight, they will approve it on appeal. If prescribed, a Letter of Medical Necessity can be submitted for a special request, often granted. Blue Shield of CA considers it experimental as well. Some Medicare Part D plans will not cover at home. But Medicare will certainly cover it in the hospital. You can always call the IPPF and we can get you a referral to an insurance advocate if you are having trouble.
For Rituximab, most insurance companies will want justification, but most will cover in the end. Often what it takes is evidence in the form of scientific support — articles on research and treatment — soon data from the IPPF P-P Registry will likely provide evidence regarding its treatment benefit.

Q: I’m searching for a new calcium supplement and would appreciate your feedback. Due to having osteopenia, I am anxious to find a supplement that will be beneficial. Researching it online proved to be overwhelming. It seems like anyone and everyone are trying to sell the “best” supplement known to mankind. I want one that isn’t overly expensive, absorbable and possibly proven to promote bone strength and regrowth. All my docs recommended Fosamax, Actonel, Boniva and Citracal. I’d prefer not to go the Fosamax route.

A1: I had been told to take Calcium by my doctor because I have some Osteoporosis, and I found the best has been by Vitamin World. They make their own vitamins. I get 500 mg, absorbable Calcium with Vit. D. 1000mg, and have to take each one with my three meals a day. At the IPPF Annual Meeting we were told that our bodies can only absorb 500mgs. at a time, which is why it is taken with the three meals, and my doctors say I am in great health. I also take omega-3 at two of those meals, since it’s important, too.

A2: I like the Country Life brand of liquid calcium/magnesium/vitamin D. It is more easily absorbed since it is in a liquid form. I was also able to purchase the mineral Strontium by Boiron while I was in France. We (IPPF members in the Forums and Discussion Group) had a discussion about this mineral and its improvement of bone density several months ago. The strontium should not be taken within 2 hours of taking calcium. There are many places that sell Boiron supplements, but

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I have not seen that their Strontium products are available in the US, but maybe online? I, too, would avoid the bisphosphonates (Fosamax, etc.) due to rare but potential side effects such as atrial fibrillation (which my mom developed while on Actonel), and the potential jaw bone problems. Since you do not yet have osteoporosis, I’d give the non-prescriptive route a try.

Keep in mind that every patient reacts to medications and other solutions differently. Most of this advice is from PERSONAL experience and may not be appropriate for you. Discuss all changes you make to your treatment plan with your doctor.

Q: What is the Health Management Program (HMP)?:

A: The IPPF’s Health Management Program is a voluntary program with no downside or cost. All the data collected is confidential. HMPs help patients achieve better health and quality of life by increasing knowledge and awareness about pemphigus and pemphigoid issues, practices, and new developments. HMP Coaches (Marc, Yvette, Susan and Sharon) will remind you to discuss certain issues with the doctor such as bone density, lab tests, and eye exams.

Most useful for those new to the complexity of these diseases, the program puts an experienced P/P patient in your “back pocket”, giving advice, perspective and questions to ask your doctor. Enrollment is simple. You will be contacted by a Peer Health Coach who can answer your questions and provide you with the Enrollment and Consent Form. After we receive your consent form, your Peer Health Coach will call or e-mail you to set up an appointment to complete our initial survey which should take approximately 30 minutes.For more information visit http://www.pemphigus.org/wordpress/get-support/hmp.

For those who are in good control and have a good understanding of P/P, you can give back to the IPPF and to those newly-diagnosed by participating in the Disease Registry. Also confidential, the data collected there illuminates areas of success (and lack) in treatment strategies and in fruitful areas of lab research. We need 1,000 patients to make statistically significant plans and there are just over 350 histories enrolled. Do make a difference for others even if you are feeling better at www.pemphigus.org/registry. This data will give researchers a better chance to find treatments with less negative impacts for generations to come, and ultimately help find a cure.

As the health-reform law takes effect over the next several years, some 32 million newly insured Americans will gain access to a regular doctor. They will soon learn what others already know: Getting the best care from your doctor requires navigating a complex relationship within the 20 or so minutes allotted for the typical office visit. Despite those constraints, three-quarters of the 49,007 Consumer Reports subscribers we surveyed said they were highly satisfied with their doctors. But they still had complaints ranging from the irritating, such as having to sit too long in the waiting room, to the substantive, such as ineffective treatments

  • Doctors and patients alike put a high value on courtesy and professionalism.
  • Patients aren’t taking full advantage of strategies that doctors think are helpful, such as taking notes during their visits.
  • Not knowing much up front about a doctor’s personality or treatment style was a real obstacle for patients in search of a good match.

Read more at:http://www.consumerreports.org/health/doctors-hospitals/doctors/physician-survey/index.htm

A gifted artist in his early 60s, the patient was a liver transplant candidate who learned he had hepatitis B some 20 years earlier. Despite the worsening fatigue that accompanied his liver failure, he threw himself into preparing for his transplant. He read everything he could about the procedure and the postoperative care, drilled doctors with endless questions and continued to drag himself to the gym each day in the hopes of being better prepared to withstand the rigors of the operation. He said. “You doctors have answered all of my questions, but what I really needed was to hear the stories about transplant from people like me.” Patients and doctors have long understood the power of telling and listening to personal narratives.

Read full article at: http://mobile.nytimes.com/article?a=742880&f=26

“Pemphigus, pemphigoid, strange names, unknown names called orphan diseases that affect the skin and mucous membranes.

This is because one of their own, Oceane was reached, that young WJC (Youth City Council) decided to mobilize and motivate as many people.

If Oceane is in remission after a period of very strict diet and medication, she knows that the disease is incurable and painful blisters that one day may return. Her mother, who is part of the National Association of control and prevention against this crippling disease, is sounding the alarm “against the vagaries of diagnostic symptoms that commonplace, if not unmasked in time, through ignorance This disease can cause death.”

A resounding success

That is why young WJC agreed to organize this charity event: “Fully charge of the project, they took the initiative, they have ensured the implementation, and deserve the success they know,” said Valerie Breton which followed the event.Aided by local associations, which intervened to ensure the show is either to logistics, these kids have a lot invested and the audience followed.

This audience was young and feel “boosted” the appearance of singer slam creazy.
But all ages have tried country dancing, while enjoying the “resto-fast” set up by the WJC.
At the Miss Junior Villers, Zahra has conquered the jury with his passion for volleyball.
It has also been a champion of Picardy minimal. Male category, Franck was named Mister Villers.

The profits from this evening will be entirely donated to the association: www.pemphigus.asso.fr