Author Archives: Marc Yale

Having a rare disease like pemphigus or pemphigoid can make you feel like you have lost control of your life. After being diagnosed you may experience fear, confusion, and you may feel unclear about your future. You may even feel helpless, vulnerable, and at the mercy of others. Your self- esteem may be compromised along with your immune system. The anxiety or stress that can bring may be overwhelming. The good news is that these feelings are normal and more importantly that you truly do have the power to stay in control!

Here are a few tips on how to keep calm and stay in control:

1.      Offer help to others – this will help you keep your disease in perspective

2.      Find the “silver-lining,” in every situation – there is always something positive to gain

3.      Respect and accept that you can’t control everything – the sooner you realize this, the better!

4.      Don’t be a victim, be a contender!

5.      Be proud of yourself – every day is a step in the right direction

6.      Learn about your disease – knowledge is power

7.      Be self-determined – you are the master of your fate

8.      Speak up for yourself – being heard builds affirmation

9.      Consider how your disease will help you grow as an individual

10.  Don’t be afraid to ask for help and support!

You are not in this alone and there are many patients that are experiencing the struggles that you are going through. If you reach out to others through the IPPF you will find that you really are in control and together with other patients like you we have the power to overcome this disease.

Not sure how to connect with others?  Just “Ask a Coach!” Remember, when you need us, we are in your corner!

Deciding whether you should continue working or go on Social Security Disability is a tough decision. It can add to your stress level and worsen your disease activity. Before you rush into any decisions you should take inventory of how you are feeling physically, emotionally, and spiritually. Your job or career can have a significant impact on these aspects of your health. It’s important to understand how your job is affecting you. If you feel like you need to be on disability you should consider the following:

  • Will you be on long-term or short-term disability?
  • How will it affect your recovery and ability to reach remission?
  • How will it affect your insurance coverage and drug costs?
  • How will affect you financially?

Once you have decided, contact your physician and let them know that you need their assistance in the process. Your physician will need to provide information that confirms that your condition is severe and that you can’t do the work you previously did due to your condition. Apply immediately at www.ssa.gov so you can start the process.

Both you and your physician will receive a health questionnaire about your condition. Make sure that you and your doctor list all impairments that prevent you from working including medication side effects. Be aware that an interview may be held to determine your health condition. Keep copies of all your paperwork, health records, and track your conversations. Get to know your case worker as they will have influence in the decision process.

In many cases Social Security Disability claims can be denied the first time. Don’t let this discourage you! You can always file an appeal with additional medical information that can substantiate your claim. The IPPF can also help provide information about the disease that may help educate individuals regarding the severity of the disease.

Bullous Skin Disorders are included under listed impairments and in many cases Quick Disability Determinations (QDD) can be made depending on the severity of your disease. Receiving benefits, like your disease, take time so the sooner you apply the better! Although the process may seem daunting, your health may depend on advocating for yourself.

Don’t be afraid to contact the IPPF if you have a question or just “Ask a Coach”! Remember, when you need us, we’re in your corner!

Preparing for your doctor’s appointment can help you get the most from your visit. Taking an active role in your care will make you an empowered patient. In addition, proactively learning about your disease will improve your healthcare and treatment experience. Collecting the information needed before a doctor’s appointment can ensure that you are organized and strengthen your doctor-patient relationship. Here are ten tips on how to prepare for the visit that will assist you in feeling better when you leave the doctor’s office.

1.      Have all your questions answered. Bring a checklist, and be ready to take notes

2.      Schedule enough time & bring your prescriptions

3.      Address priorities first & clarify concerns

4.      Remember to say “Thank You”

5.      Learn what tests are needed before the visit (if any)

6.      Have copies of your medical records

7.      Get a summary of your visit when you leave

8.      Fill out medical release to get your records

9.      Be patient

10.  Be confident and share your knowledge

Sometimes it is valuable to gain a second, third, or even fourth opinion when seeking a treatment for pemphigus and pemphigoid. Additional opinions also provide an opportunity for you to learn more about your condition and it can offer some peace of mind that you are approaching your disease with the best chance for a favorable outcome.

Remember, if you have questions don’t be afraid to “Ask a Coach” because when you need us we are in your corner!

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!

You just left your doctor’s office, and you’ve been told that they want to try Rituximab (Rituxan/Mabthera). Most likely, the doctor explained how the treatment is a B-Cell inhibitor, and that it is a very targeted therapy designed to eliminate those cells in your body that are attacking the proteins in your skin. Your doctor has informed you that it is an infusion, reviewed the treatment schedule and protocol with you, possible side effects, and answered any other questions or concerns that you have. Your doctor most likely forgot to tell you about one very important aspect: How will you know if the Rituximab is working?

If the Rituximab is supposed to eliminate your B-Cells then it should be measured exactly that way. Ask your doctor to perform a baseline test to determine you B-Cell (CD20) count prior to your first infusion. A follow up test should be done at the conclusion of each treatment cycle to measure the decrease in your B-Cells. Remember, it may be necessary to have several cycles to eliminate these cells but the best way to check is a simple blood test.

Along with this B-Cell baseline test, it is recommended that your physician performs a thorough pre-treatment screening including:

Your Medical History – Any history of cardiovascular or pulmonary disease, recurring infections or allergies.

Physical Examination – Review all medications and possible contraindications.

Other tests should include; Chest X-ray, routine blood test, Hepatitis B screen, and immunoglobulin levels

Our disease and the treatments can be confusing, so if you’re not sure just “Ask a Coach”!

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

Marc Yale – Certified Peer Health Coach

Many times when seeing a physician for pemphigus or pemphigoid they are quick to prescribe a systemic treatment that will hopefully help you reach remission. This can be a good thing. However, sometimes the obvious may be overlooked.  For example, if you are in pain,  having trouble eating or swallowing, your clothes are sticking to your lesions, the blisters on your scalp make bathing and showering difficult, or perhaps you are having chronic nosebleeds. These symptoms can be managed with topical treatments, but they are often forgotten. There are different options available for different body locations in many different strengths. Be candid with your doctor and let them know where you are having disease activity and how severe it is. Although, ultimately, the systemic treatment is going to make the difference in the long run.  Topical treatment can help relieve many of your symptoms along the way!

If you’re not sure which medications to ask for or their strengths, just “Ask a Coach”!

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

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

Although everyday (whether I like it or not), I am reminded what it is like to live with Pemphigus and Pemphigoid, I am fortunate because I have the opportunity to share my story and build relationships.

Recently, the IPPF has welcomed two new Peer Health Coaches to our team, Mei Ling Moore (Los Angeles) and Gloria Gutierrez (Orlando). They both have been providing support for our community members for quite some time so it seemed only natural for them to volunteer as Peer Health Coaches. Both are compassionate listeners who actively participate on the IPPF website and Facebook page, communicate well with those that need support, provide relevant resources designed to improve patient/caregiver issues and make a difference in people’s lives by building long-lasting relationships.

I had the honor of seeing them in action recently at our annual Patient Conference in San Francisco and was amazed at how well they both provided confidence and hope to everyone they spoke with.

Please join me in welcoming Mei Ling and Gloria, and feel free to reach out to them for peer advice.

Remember, you always have a “Coach” in your corner!

With Pemphigus and Pemphigoid, painful oral lesions frequently occur in the mouth and throat causing difficulty with drinking and eating solid foods. Let’s face it, it can be just painful! Assessing your individual tolerance to foods and adjusting what you are eating will enable you to better understand which foods to eat and which foods to avoid. For many, highly seasoned, acidic, or salty foods are irritating and those foods that are dry, sticky, or abrasive can be difficult to swallow. Extremes in temperatures of liquids or solids such as ice cream or hot chocolate may cause pain for some. In the case of severe mouth sores, use a blender or food processor is accessible.

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.
  • Take a swallow of a beverage with solid food.
  • Eat small frequent servings rather than a large amount of food at one time.
  • Rinse your mouth with water, peroxide, or Biotene during and after eating to help
  • Remove food and bacteria and to promote healing.

Having oral lesions can present many challenges including; pain management, oral hygiene, nutritional intake, and your overall health. Speak with your doctor about ways to help relieve the pain and ensure that they are monitoring you blood sugar levels if you are taking systemic steroids. Make sure that you inform your dentist of your condition and require them to use caution when treating you.

If you have difficulty swallowing and find yourself choking on food, see your doctor immediately. Ask to be seen by an ENT so they can help determine the extent of your disease activity. The mouth is often one of the most difficult areas to treat and requires 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“!

When you need us, we are in your corner!

Marc Yale – Peer Health Coach