Tag Archives: pemphigus

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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!

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Studies have shown that there is a mind-body connection.  It is known that stress can cause headaches, muscle aches, tummy aches, and blisters!   For those affected by pemphigus and pemphigoid (P/P), when your stress levels are high, the antibodies know when it is time to come out and play.  Horrors!  It is easier said than done to remain calm and stress-free.

Have you experienced when you have a headache and you worry more about something and the headache gets worse?  That is an example of the mind-body connection.

The brain signals the immune system, and we never know until after it happens.  In order to ward off these signals, it is important for patients to remain even-minded.  HA!  You say!  You’re right!  However, there are ways for us to get better at this.  It just takes practice.

Meditation can be very helpful.  Even if only for 5 minutes at a time.  Never feel that you must sit in a lotus position and keep stiff for an hour!  That is not what meditation is about!

There are a lot of meditation videos on YouTube that you could take a look at.  Just type in the word “Meditation” and a lot of suggestions come up!

Breathing exercises are a great way to help keep your blood pressure down. They help to bring a sense of calmness to envelope you.  Essentially, you are inhaling slowly to a count of 10 or 20 and holding the breath for 10 or 20 and then exhaling slowly for 10 or 20.  When you exhale, think of a happy word (like an affirmation) ie: joy or peace.