Tag Archives: coach

Having a flare after being in remission can be a scary and frustrating experience. Thoughts run through your head about your previous experiences and you may wonder if your disease will be as bad as it was before. When you have the flare, it is important to recognize it and take the challenge head-on. It’s easy to become stressed from the uncertainty and lack of control, but remember that stressing will only make things worse. Here are some tips to reduce the intensity and time that you may have the flare.

1.      Schedule an appointment with your doctor immediately.

2.      Have your doctor give you a clinical diagnosis or get a biopsy done to confirm the flare. There are many differential diagnoses for your disease so you want to be sure it is what you suspect.

3.      Discuss with your doctor a treatment strategy and begin right away.

4.      Track your disease activity in a log, this will help you determine if you condition is improving.

5.      Follow up with your doctor regularly and advocate for yourself. Seeing your doctor every 4-6 weeks is recommended. If you have an aggressive flare you may need to see your doctor more frequently.

6.      If you need support, contact the IPPF and talk with a Peer Health Coach. Coaches are available to answer questions and help you decide how to best handle your flare.

It is common for flares not to be as intense as your first experience with the disease, but all patients have different experiences. The important thing is to be proactive and stabilize the disease activity as soon as possible. Flares are part of living with pemphigus and pemphigoid but if they are handled quickly and with a positive attitude you can eliminate them sooner.

Remember, if you have questions to “Ask a Coach” because when you need us we are in your corner!

Rare Disease Day (RDD) is a unique global advocacy effort to bring recognition of rare diseases as an international health challenge.

On March 2, 2015, rare disease patients, caregivers and advocates, rare disease organization, legislators, and industry representatives gathered at the California State Capitol. Will Zrnchik, IPPF CEO, welcomed the crowd and introduced Peter Saltonstall, President and CEO of the National Organization for Rare Disorders. Peter said, “NORD has been working … to find a therapy, make sure the pathways are clear, and to make sure that the incentives are there for industry to want to develop drugs for small populations.” California Assembly Member Katcho Achadjian (D-36) co-sponsored CA House Resolution 6 recognizing February 28, 2015 as Rare Disease Day in California.

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Inside the Capitol, Andrea Vergne, rare disease caregiver and advocate, told her grandson’s story living with a rare disease. Gary Sherwood, Communication Directors at the National Alopecia Areata Foundation, inspired attendees to become self-advocates and work with their elected officials. Adding to the advocacy theme, Eve Bukowski, California Healthcare Institute, echoed the need for patients to self-advocate. A special guest, California State Senator Dr. Richard Pan discussed the importance of rare disease advocacy and research.

Meanwhile, Marc Yale, IPPF Senior Peer Health Coach, and Kate Frantz, Awareness Program Manager, celebrated RDD events in Washington, DC. Marc attended NORD’s special preview of the new documentary “Banner on the Moon.” Patients, caregivers, advocacy groups and patient organizations saw Cindy Abbott’s inspiring. Cindy carries a NORD banner with her on several adventures to spread rare disease awareness. These included challenging herself to climb Mount Everest and participating in the 1,000-mile Alaskan Iditarod. Cindy’s perseverance and commitment to live life to the fullest were very inspiring.

Kate and Marc attended the American Medical Student Association’s Annual Convention. Two P/P patients, Liz Starrels and Mimi Levich, shared their P/P stories. Many students had never heard of P/P, or only briefly remembered it from their textbooks. This was a wonderful opportunity to spread awareness and encourage medical students to “Put P/P on their Radar!”

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Marc represented the P/P community at the Rare Disease Legislative Advocates (RDLA) conference.  There was an overview of the 21st Century Cures Initiative (http://energycommerce.house.gov/cures), which many believe is the rare disease community’s greatest hope for new and emerging treatments.

Marc also met with several Congressional Members and legislative health experts encouraging their support of the Orphan Product Extensions Now Accelerating Cures and Treatment Act of 2015, H.R. 971. This legislation would re-purpose existing drugs for rare diseases allowing patients greater access to vital treatments.

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Marc attended a symposium celebrating rare diseases research efforts across NIH, the Federal Government and the entire advocacy community.

There are over 7,000 rare diseases. 1 in 10 Americans are affected and 95% of these diseases have no approved treatment. Rare Disease Week and Rare Disease Day is an opportunity for the Pemphigus and Pemphigoid community to be heard by advocating for yourself and others.

If you have questions about current legislation or would like information on how you can become involved, please contact marc@pemphigus.org.

Results So Far

I had a follow-up appointment with Dr. Williams on July 17, 2014, one month after my first infusion and two weeks after the second. She looked at me and I swear her jaw dropped. She was amazed by how well I had responded. That was a fun appointment!

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She had consulted Dr. Anhalt shortly before my treatment. Dr. Anhalt suggested going off of azathioprine a month after my second infusion (August 1), and to start a slow prednisone taper. I asked Dr. Williams if I should stop taking azathioprine now, two weeks before we were planning. We agreed I should stop taking it. One drug down!

Since then I haven’t taken azathioprine. Better yet, I’ve been on a continual prednisone taper. I started on 25 milligrams every other day. A week later, on July 23, 2014 (three weeks after my second infusion) I took these pictures. I was completely lesion free! I was ecstatic to say the least. This far exceeded my wildest dreams!

In January 2014 I am down to 2 milligrams of prednisone, every other day! This is the lowest dosage of prednisone I have ever been on. The best news is my skin is completely void of lesions. Sure I’ve had one or two minor ones, but nothing that doesn’t clear up quickly. Pretty amazing considering where I started.

I’m not claiming remission — yet! While it’s easy to be confident about my recovery, I prefer to say I’m very optimistic about my future living with pemphigus. What I have learned over the years about this disease is things can change pretty quickly. I could end up in total remission, or I could end up needing another round of Rituximab. Either way, I believe I will be better off than had I not opted for rituximab. For that I’m very grateful!

 Continued Support and Education

Each individual is just that, an individual. These diseases aren’t like more common diseases, like Type II Diabetes. If you go to 10 doctors after a diabetes diagnoses you will probably hear the same thing and expect the same results. With pemphigus and pemphigoid being rare, ultra orphan autoimmune diseases, your results and advice will likely vary.

Even though I’m a Peer Health Coach, Marc Yale has continued to be my coach. I can’t thank him enough for his time, knowledge and support he’s given me over the years. My goal is to help patients like Marc has helped me, and share this knowledge with them each and every day. Reach out to the IPPF and use its wealth of knowledge and patient resources. If you can attend the IPPF Patient Conference, I encourage you – I implore you – to go. The information and fellowship really does make a difference!

In the end, my biggest piece of advice to you is to be proactive in you care and treatment. Work with your physicians and create a team committed to your success. Share what you learn from your coach, attending a conference, or from a conference call with your doctor. Ask them to contact the IPPF who will connect them with a P/P expert. Whatever you do, it’s your health and quality of life at stake, so make informed, educated decisions. I did and couldn’t be happier!

Good luck, and good health to you all!

Part One
Part Two

With pemphigus and pemphigoid, painful oral lesions frequently occur in the mouth and throat. This causes difficulty when drinking or eat- ing solid foods. Let’s face it — it can be just painful! Assessing your individual tolerance to foods and ad- justing what you are eating will enable you to bet- ter understand which foods to eat and which foods to avoid. For many P/P patients, highly seasoned, acidic, or salty foods are irritating. As are foods that are dry, sticky, or abrasive because they can be difficult to swallow. Extremes in temperatures of liquids or sol- ids, such as ice cream or hot chocolate, may cause pain for some. In the case of severe mouth sores, I recommend using a blender or food processor. Here are a few helpful hints to remember:

  •   Drink liquids through a straw.
  •  Cook coarse or hard foods, such as vegetables, until they are soft and tender.
  •  Soften or moisten foods by dipping them in gravies or cream sauces.
  • Sip a beverage when swallowing solid food.
  •     Eat small meals more often instead of one large meal.
  • Rinse your mouth with water while eating (or use water, peroxide, or Biotene afterwards).

• Remove food and bacteria to promote healing.

Having oral lesions can present many challenges including; pain manage- ment, oral hygiene, nu- tritional intake, and your overall health. Speak with your doctor about ways to help relieve the pain. Also make sure they monitor your blood sugar levels if you are taking systemic steroids. Don’t for- get to inform your dentist of your condition and ask them to use caution when treating you. If you have difficulty swallowing, or find yourself frequently choking on food, talk to your doctor. You may want to ask to be seen by an ENT to help deter- mine the extent of your disease activity. With pemphigus and pemphigoid, the mouth is one of the most difficult areas to treat and requires due diligence. Changing your behavior and habits can be the biggest “pain” but will eventually pay off. If you need help, encouragement, or suggestions… just “Ask a Coach!”

All it takes is the slightest bump up against an object, just a few too many minutes in the sun, eating something that is hard and sharp or even the force of water pressure coming out of your shower head to cause trauma to your skin tissue.  This trauma creates a reaction in your body’s immune system and before you know it a blister or lesion has appeared. So does this mean that you can go out in the sun or do normal activities that most people do? No, but as a patient with pemphigus or pemphigoid it is recommended that you be more aware of any activity that may cause trauma to your skin tissue.  If you have to ask, then you probably already have the answer and you should avoid it and if you are not sure…“Ask a Coach!

Remember, when you need us, we are in your corner!

Marc Yale

Certified Peer Health Coach

Prednisone Tips

  •  Take as early in the morning as possible so as to avoid sleep problems at night.
  •  Supplementing a healthy diet with calcium will help to keep bones healthy through a course of prednisone.
  •  Reducing salt intake can prevent side effects associated with fluid retention.
  •  Taking it with meals could prevent stomach upset.

If you find that you are too energetic, you could try to:

  •  Do some deep breathing, yoga or listen to meditative music.
  •  Avoid caffeine after 4:00 or 5:00 P.M. to help avoid sleeplessness.
  •  Weight bearing exercises will help keep bones strong. If too difficult, stretching exercises in a swimming pool is also good.

When you need us, we are in your corner.

 

July 10, 2012 — I will remember this date for years to come, echoing with the words, “You have pemphigus vulgaris.” This meant nothing to me. I did an Internet search and was shocked. It looked grim. I couldn’t believe this was happening!

I was unable to eat a normal diet and large areas of my mouth, throat, and nose became affected. I am a professional clarinetist so this was bad news. My consultant, aware of the impact, stepped up treatment from a mouth rinse to systemic medication. The prospect of high levels of powerful drugs filled me with dread.

I found the IPPF web page and contact a Peer Health Coach. I was soon contacted by Sharon Hickey. She patiently listened to my story, sent information describing various treatment options. It was very reassuring when my dermatologist suggested a similar plan. It was even more reassuring when Sharon told me that my consultant, Dr. Richard Groves at Guy’s Hospital, London, is highly respected in the field of immunobullous diseases.

The treatment came just in time for my disease was progressing in strength and scope. Lesions cropped up on my back and scalp. The sores in my mouth were distressing and painful and for a time all but derailed my career and profession. I found the early days of medication, almost worse than the disease itself. Now, several months into treatment, I see the benefits! I can eat a wider variety of food again and recently gave my first concert … pain free!

The IPPF Peer Health Coach Program has been wonderful! For a while, I felt I had no recognizable future. However, Sharon has been with me all of the way, offering reassurance and information. Her sheer joy and zest for life has been a great encouragement and helped me to get beyond that point. Sharon put all of this into perspective and I have been able to accept the seriousness of the disease while learning not to let it totally dominate my life.

I was amazed when Sharon announced she was coming to England and that we should meet. I had never met anyone with pemphigus before. Sharon enjoys music, so we arranged to attend an Advent service at St. Paul’s Cathedral in London where I teach clarinet, sax, and recorder. The service was beautiful and dramatic with the choir singing superbly. The journey from darkness to light (represented by plunging the Cathedral into darkness) is a potent symbol of hope. It was such a pleasure to introduce Sharon, her family, and friend to Father Michael, the school chaplain. It brought two parts of my life together in an unexpected and happy way.
I am lucky in many ways. I was diagnosed quickly; have mild disease that is slow to progress; receiving treatment from a very able dermatologist; and healing well. I am beginning to look beyond pemphigus to a more balanced life. This sense of balance and calm has come from the generosity of other people with the disease. Siri Lowe of the Pemphigus Vulgaris Network, and the many kind people on the Facebook Pemphigus Vulgaris page who have been a constant support. The IPPF website has provided me with a reliable source of information. The IPPF Peer Health Coach program — and Sharon — have brought a sense of security back to my life. I am so glad I had the chance to meet Sharon in person to say thank you!