Tag Archives: pemphigoid

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This article is meant for those of you who have recently or about to move to a new area. After living in the greater Seattle area for 58 years, I moved to the San Francisco Bay area in August ‘14.

I encountered more challenges that I had expected. I had to find new medical insurance, since the company that I was with in WA isn’t licensed to cover in California. I also had to find a new dermatologist and general practitioner.
First, I had to decide on what kind of insurance to get. In WA I was with a company for around four years. They were much like Kaiser in the west. You can only go to Kaiser providers, labs and prescription services. I was used to this system, however it felt restrictive. The other option was to pick an insurance company that was a PPO.

Finding a GP was probably the hardest, in the sense that I felt a bit like I was shooting in the dark. My insurance agent unofficially suggested I look for a doctor within the John Muir system. They are close, and generally good. It was much easier to find a dermatologist, because I already knew who I wanted. When moving though you should always contact the IPPF and have them re-send you the physician’s referral list. This way you can see the doctors in your new area.

I was familiar with Dr. Peter Marinkovich at Stanford Medical Center. He is on the medical advisory with the IPPF and I have heard him speak before. I felt great about working with him, and his staff. It’s over an hour drive away from me, but worth it.
I have a few suggestions to keep in mind. If you are moving due to a job change, or your spouse’s, then I believe you are more restricted if you don’t want to self-pay. Read up on what kind of choices you have for a dermatologist in your area. Talk to your insurance company’s customer service if you have any questions regarding coverages. Find out how much experience the dermatologist has treating pemphigus/pemphigoid. In addition to that, it’s important to be able to feel connected, and your doctor understands you.
If you need help finding a dermatologist, feel free to contact Noelle Madsen at the IPPF office. She can make some recommendations, as well as send you a list we have. She can be reached by phone at 916-922-1288 x105 or by email at noelle@pemphigus.org.
Remember, when you need us we are in your corner!

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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!

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Living with a bullous skin disease is a challenge in more ways than one.  In addition to taking medication we also need to be taking supplements, avoid certain foods and spices, take caution in how we move and bathe, and relax to reduce stress.

We also need to take extra precautions against the sun’s harmful rays…more so than the average person who does not have pemphigus or pemphigoid.

It isn’t always a sunny day that can bring the harmful rays.  Cloudy days can be deceiving – you can get your worst sunburns through the clouds.  Reflections from the water in swimming pools, lakes, oceans, etc. increase the harmful effects of the sun’s rays as well as the reflections from the snow when skiing.

Women also need to make sure that their foundation has an SPF ingredient – this was told to me by the national makeup advisor for Dior.  I never knew this!  But it does help…even if we don’t actively stay out in the sun and are just running around doing errands.

According to the American Academy of Dermatology:

“Dermatologists recommend using a sunscreen with an SPF block of at least 30, which blocks 97% of the sun’s rays.  Just make sure it offers a broad-spectrum (UVA and UVB) protection, an SPF of 30 or greater, and is water resistant.”

Before trying to figure out which brand is the best to buy, discuss with your dermatologist. He/she can make suggestions for you based on your skin’s level of activity.

Don’t forget your ears, too!  Ear lobes are very sensitive and need protection. For those of you with scalp involvement, it is best to consult with your dermatologist who will recommend what sunscreen products are best for the scalp.  Hats are advisable when venturing outside.  Solid hats…not straw as the sun’s rays will stream through the weaves and cause damage!  Take extra care with the “driver’s arm” — you know, your arm that is exposed to the sun when you’re driving?  The sun’s rays are intensified through the glass windows. Best to be sure you are either wearing long sleeves or extra sunscreen.  If you are going in the water, sunscreen needs to be reapplied often.

UV radiation also impairs the skin’s immune system in alarming ways. Sun exposure reduces the number of watchdog cells that help recognize and respond to antigens, and alters their function so they are as effective as dozing prison guards. “This effect on immune suppression can set in even before a sunburn,” Dr. Baron said. Reference: http://www.nytimes.com/2009/05/14/fashion/14SKIN.html?pagewanted=all&_r=0

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